My Blessed Life With Camden James....and a CDH journey.....

Nissen streching #3

2012-01-23T09:20:00.002-05:00

Camden has completely recovered from his cold so we are thankful for that!

As for the choking, he did well for a little while, but the nissen seems to be getting bad again. It was to the point where nothing would go through him, not even liquid. I have been holding back on another surgery, but as much as I cringe over all the intubations he has had, we have to do this, or eating orally is out. PLus, he wants to eat now, and can't. Breaks my heart when he follows me around the kitchen begging for food.
The nurse called today and we are workingon scheduling a barium study (we want to see how the nissen looks now-it has always been super tight and there was also a little "pocket at the end of his esophagus) and then we will schedule stretching number 3. My prayer is that THIS is the LAST one needed and we can FINALLY work on eating and get past these nissen problems.

Hospital stay....

2012-01-06T12:28:00.002-05:00

Camden had been trying to fight something off and by day three I checked his O2 sats and they were on the low side. I JUST got rid of my O2 so I couldnt even ride it out until I was able to see a Dr, so off to Gainesville ER we went.

Negative for RSV and flu, didn't give him any meds...basically his little lungs just needed some help this time, so he is back on oxygen. Mom and I came home last night while daddy stayed with Camden. I am now waiting for tanks to be delivered, and for my boy to be home....back on oxygen. ugh. I am reminded of how much I hate what CDH has done to my child, but at the same time so blessed that he IS coming home to us. So much tragedy with people losing children and loved ones this year, and just through the Christmas season. My heart has been aching for so many.

Miss my baby and can't wait to have him back. I hated to see him struggle and breathe so hard but am so thankful it wasn't worse.

Update for the (almost) New Year!

2011-12-29T17:23:00.003-05:00

Camden has continued the same path since October. Weve been to the Dr, set up more tests, then he eats better. Then he chokes more. Overall, the choking ( caused by the nissen being too tight) IS getting better. Could he use another stretching on it? Absolutely. But I have decided to give it more time and see if growth will help stretch it without having to put him under.... again.... for the ....lost count but maybe somewhere around the ......13th time? So yea, we are waiting as of now. So he is eating some orally, some by tube. Depends on how things work that day! =) He is drinking more and more from a bottle so we are getting a lot more down orally!

On another note, he is super smart and is talking in sentences. He will be 3 in January!! He is still a skinny lil thing, weighing around 25 lbs, although he did hit 26 at one point! ;o) He is still wearing a size 8 shoe. Didnt get the little foot from me!

He sings and dances and is doing almost everything a 3 yr old should be doing. He can almost go up and down stairs on his own as well. He is so precious and tells me, "Good mornin' Momma" every morning. His little phrases crack me up. He is so sweet, yet can be so silly!

Still holding off on testis and trach hole closure surgery. Waiting on the nissen problems to stop. Hopefully after 2012, things will start calming down and he will have some years to just "be" and only go fro his normal checkups. I cant wait for those days, yet I feel so grateful that we are where we are.

We also got a good xray report this month. All organs in place, diaphragm intact! Thankful to God
....So, here we go, 2012. =o)

no surgery.

2011-10-06T12:57:00.003-04:00

After meeting with anesthesiologist, she felt it isn't wise to do any surgery until he isn't getting food stuck in nissen anymore. She said this was her opinion, (been doing it for 30 years) and that other Drs may say she is an "idiot" but after her sharing the risks, I canceled the surgery. I'm not risking aspiration for testicles at this time.

Now we wait for busy Dr Ks office to call. I am trying to schedule another stretching. I am focusing on this problem only. After this is all finished (prayerfully in the near future?) I will try to get his trach hole closed and the testes surgery all at once. At least that is my plan....

Btw: My lil rock star is potty trained in BOTH areas now. He tells me every time and is finally not "cared" of poo.

Surgery update....

2011-09-22T21:42:00.002-04:00

Urologist wanted Camden to see anesthesiologist before he does testicle surgery. I told him we've had surgeries and he has done well, but he still wants him seen. I am totally ok with that. We go to Jax to see them this Tues, then surgery is set for OCT 4th. Slowly but surely gettin' those things were they need to be! he will be pulling left testicle down as much as possible and not even attempting the right one at this time, so unfortunately this doesnt look like the last surgery in this department either. =o/

Camden is STILL choking. Maybe even getting worse again? (but wants to eat!) So, as much as I am dreading this, we will make an appointment with Dr K and talk about doing 3rd nissen stretching. It has been going on too long and it is just heart breaking to watch. I know it has to hurt too, but that is all he knows and he doesn't complain during the episodes.

His little sentences are turning into longer ones, some even 4 words. He is also officially potty trained, even through the night with a 500 ml feed. YAH! he's is the MAN! ;o) Ibtw- NEVER expected him to do this, but he just holds it and pees when he wakes, that works! =)

As I feel frustrated and sad about these issues he is having, I am thanking God for my boy!! We can get through these smaller issues!! It is so hard, especially when he goes a few mths w/o surgery,( I get spoiled! ;op) but I'm thankful that his breathing is so wonderful and he is strong and is prepared for this...

Potty Training.

2011-09-02T21:28:00.002-04:00

He has done amazing. We started this week, and by the second day he was asking to go and would do it. He has shocked me, once again. The first morning was torture for the both of us. He was SO scared about it coming out, but I knew he had to see it and know that it wasn't so "cary" as he was screaming. Once that incident was over, we were good to go! There is NOTHING cuter than him running around in his undies with his tiny hiney.

Testicle surgery has been moved to Oct 4th. Was ready to get it over with, but I'm assuming someone just needed surgery more than us. Still waiting for anesthesiologist to call with their appointment.

Camden is taking his meds orally, and is now taking his amoxicillin (for missing spleen taken out in first diaphragm repair) from the little medicine cup we were never able to use. Today, watching him sipping his meds in his undies was a little emotional for me. I am so thankful and have never been so happy to potty train a child.

Getting some surgeries behind us!

2011-08-25T13:57:00.002-04:00

We go for surgery Sept 15 for Camden's undescended testes. The Dr is saying he wants to just watch the right side (side that surgery was already attempted) for now, and focus on bringing left side down. He also wants us to have a consultation with anesthesiologist before surgery because of Camden's past. Camden has done very well with the last 2 intubations since trach was removed, but if this Dr wants to be extra cautious, Im all about it. Ready to get some of this over with.

I spoke too soon (once again) in my last post about Camden's eating. Today, NOTHING is wanting to go through the nissen. I also just wasted his dose of meds not knowing he was about to choke. Up came the noodles he was eating, along with the fresh meds I had just gave him orally. = o/

August update!

2011-08-22T20:26:00.002-04:00

Not MUCH change, but some things to update.

We went to ortho, and as of now, no scoliosis! Thank God!

We go to urology this Wednesday. I am wanting to get his testis "fixed," since they are not able to fall on their own. They are really stuck and may need a couple surgeries. I'm ready to get this all over with. Dread it, but ready to put it behind us.

Eating--Camden's tight nissen problem has remained unchanged until the last few days. He was choking on food every few days, and then some of it would eventually come back up esophagus. The last few days he has eaten more, and only had one choking episode, but food didn't come all the way up! He kept it down. I am not getting my hopes up, but Im praying that this is meaning the nissen is starting to stretch. This has happened before, but this may be the real deal, right?? ;o) He is still getting continuous gtube feeds through the night which he needs. Im really focusing on him eating orally during day,(when he isnt choking) but if he doesn't have a good eating day, from either being picky or choking, I will give him tube feeds during day. Overall this is amazing progress for Camden, and I am proud of him.

He is talking so much more, he is full of energy, not quite walking up stairs on his own but now can while holding on to rail, swimming with his puddle jumper, singing songs, (loves to sing Amazing Grace) pitching fits,(not too many, he really is a sweetheart) making us laugh, and doing other NORMAL 2 yr old things that make my heart oh so happy.

July is here......!?

2011-07-11T22:32:00.002-04:00

silly boy!

Camden started doing well with the choking...until last week. It got bad again. He has continued to choke and I am thinking we are going to need another dilation of the nissen area. It's just not getting better, and that area can start to close up again. This was the reason we were going to do the surgery a few months back and changed our minds. Vicious circle. As usual.
So, we are back to tube feeds and the occasional snack which is caused by him begging for food and me giving in. And then he chokes.

He still has a gtube but for totally different reasons then why he first got it. There is something wrong with this picture. But, these are the things that can go along with CDH and nissen surgeries.

We did some potty training today. A lot. There was crying and fighting and he hates it. NEVER had to deal with this with my other kids. He comes to me and says, " I pooped" so I will change him, but other times he doesnt tell me. (He is so stinkin' FUNNY and I laugh at so many of his comments throughout the day.) Another thing that makes the potty training hard is ofcourse the all night feeds, and the fact that he has to drink soy formula which gives him awful runs. I am doing more blenderized diet for that reason, but the soy is nice at night because the BD gives me a rough time beeping for hours, clogging the pump. I could add more liquid, but that just adds more volume and less calories.....ugh. We will play with potty training, Im in no rush with him, but he sure looks adorable in those diego undies! The 2/3 t are too big in his skinny little butt.

I need to make a few dr appointments but I have enjoyed the break. *sigh* I know he has too. He hates going, but I am going to have to get on it soon. We need to see urology for his testes, and ortho for his spine. We have never went to ortho and need to go as a lot of CDH kids can have scoliosis.

There is the "health" update, but other than that, Camden is doing well. My beautiful blessing.

Thank you, Jesus.

JUNE Update!

2011-06-22T22:26:00.003-04:00

All is pretty well with Camden.
He is eating a little better and choking a little less. We just need time, as always, but things are getting BETTER.
He is talking more and more everyday. He keeps us laughing. He loves singing 'Amazing Grace' and 'Im a Little Teapot.'

I haven't been doing any day tube feeds and just keep offering him things. WE ARE on night feeds, otherwise he'd just blow away. He still looks like he may blow away, but Im really trying to stay off the tube feeds during the day.
He takes his medicine by mouth!! I use the syringe and he does it. He doesn't really like the new amoxicillin flavor, (dont they know there are kids with oral aversion and ya cant change flavors? ;p) but he drinks it, signs "all done" and is proud of himself.

Potty training is non existent right now. "Camden do you want to pee on the potty?" and then "NO" before I can finish the sentence. I would be more forceful, but the soy formula continues to give him the runs which has been a nightmare . I am going to have to do a blenderized diet through the night and just find a way to keep it cold. Ugh

He continues to amaze me, and I continue to give God all the glory for his life. What a joy he is to have and I am ever so grateful.

CHERUBS (CDH org) is in a contest "Vivit Gives Back" and we are trying to win for research money and more. We will also be giving 10,000 to help an orphan with CDH. We are begging for votes. Votes are HARD to get. (please vote through FB if you read this, find me on there ) But through this contest there are many emotions. It is so important to us. Most of us CDH moms are so passionate about it. Especially now that I am in the "calmer" CDH times at the moment. We dont want others to have to go through what we have. We want to help this orphan, who BTW has people waiting for him. We want research. We don't want anymore babies leaving this earth before their parents. Seeing these post from moms who have LOST their babies is heartbreaking. I hate CDH. Please vote through FB. It is so easy, http://www.vivint.com/givesbackproject/charity/3 ....but so important.

I had a mom share how important it was for us CDH moms to keep blogging. Her baby is in the NICU right now with CDH. I haven't been keeping up with this blog as much because I feel like we've been dealing with the same issues over and over. I will make sure I blog more. Someone out there may need it.
So, this is for you, Brandy. I cant WAIT until I have to remind YOU to keep blogging about Brock because he is doing so well!

Feeding rollercoaster continues...

2011-05-18T21:50:00.002-04:00

Food is getting through the nissen now, but he isn't wanting to eat by mouth as much. He will eat chips though! Doesnt drink much. Few sips water a day, now wanting it with a real straw with a cup. He wants noodles one day, has a few bites then is done for the week. He begs for rice, so I cook it right then and there, and he screams NO at it. I could go on. Can we say picky oral aversion child?
Then the other day he retched so bad after a tube feed that he actually threw up a little. What in the world? We went from a too tight nissen to this again?
He is retching as I type when I just gave him 120 mls. His normal feed is 150 and he has even been taking more than that at times. Today he started the gagging again. I am done trying to figure things out. I hate HATE to watch him get sick, but I dont know what to do. HE HAS to be fed, but gets sick. Guess we just go back to the pump/slow feeds and he is on that for hours during the day again.
I am not even talking about it with people. It has been 2 yrs of the ups and downs with the feedings. So, here is where I will vent. People are bored to death listening to it and really, Im sure they just dont understand it. THen you have people that think you just need to let him get hungry and they just dont understand this HUGE problem. And they never will...
I dont think there is a specific problem causing the retching anymore. I am finally going to start believing Dr K and accept that this is just the way it is. Im seriously ok with it, but at the same time Im starting to cry. Make sense? Guess that means I think this is his life for now and however long it continues and I hate it for him. As soon as I wean him to faster feeds he does great for a while then he cant handle it again. Or food gets stuck in his esophagus. Or something else. VICIOUS cycle.
So, for myself tonight, I am listing some positives:
He will try/lick some foods now.
He doesn't dry heave when he sees food.
He lets me brush his teeth.
He is talking like crazy.
He runs, swinging those darlin lil arms back and forth.
I can wipe his mouth/nose/face w/o him gasping for air because he is so scared.
He held a popsicle at church tonight, licked it some and let it melt all over himself.
His sticks his tongue way far out like a lizard now.

a yr ago these things seemed so far away. All the norms for other babies have been huge accomplishments for him, and he is doing them. One day I will look back and think how far he has come again. Just seems like such a long road while you are living it.

Thanku, Jesus that Camden is doing amazing.

Back home & no surgery

2011-05-05T19:35:00.003-04:00

This post will probably be all over the place, so I'm warning ahead of time, but just wanted to explain the details about today.

We made it to Gville this morning and did the esophagram. We were leaving to go find a hotel since we were supposed to have surgery tomorrow morning and as soon as we walked out of hospital I got a phone call to come back inside and talk with Dr Kays.

The call was perfect timing, because I was not 100% on this surgery BECAUSE I gave in a few days ago and let Camden eat some, and it made it through. It never came back up. So, for the last few days I have been wondering around in confusion and hoping (strangely) he'd choke it up to prove to me that he needed this major surgery.
He never choked it up.

Soooo, Dr K says he was feeling like he didn't want to do the surgery right now.(I told him about the food that stayed down) I was relieved about no surgery, yet thinking, "Oh, he'll probably choke on the next thing he eats" (a little faithless moment lol) But I was SO glad we could go home and my boy wasn't getting cut on.
Then I cried, and cried ( I have always held it together with Kays, but not so much today ;S) because CDH can be such an emotional roller coaster. And I already know about this roller coaster. I have lived it for the last two years through trachs, and vents, and oxygen tanks, and am so glad to have him HERE to be able to do it all that, but I was wanting him "fixed"

Hmm.There isnt just a quick fix. Yet, I know this too.

If he starts eating and does worse, we'll go from there. Has the nissen loosened a little and things are passing through now? Will it slowly start to close back up again? All unanswered ?s and we just have to take it day by day.
Dr K said the nissen still looks too tight, but it did look a little better according to esophagram, ( and that fact that some food made it thru) but hard to tell completely. He wanted this last test before surgery to convince him he needed it, we did it, and he made his best decision. A third major surgery like that,cutting through the same incision is a big deal and we need to be 100% sure it is needed. There is also a chance (if this nissen surgery isn't needed before) that as Camden stomach grows it will loosen that wrap around his esophagus. At the same time we want Camden to eat by mouth so we don't want to wait forever. (but thank God for gtubes) So we wait for now and see if things are starting to work better on their own.
We are trusting God. Once again, that is all I can think to do. ;o) God worked a few things out today and I came home with peace and clarity. I've been so worked up and confused over this surgery, but I knew He would give us the answer (and peace about that answer) before surgery.

I told you this post was going to be all over the place. In the mean time Camden is eating some spaghetti noodles, climbing all over the high places in the school room that he shouldn't be climbing on, and needs a bath because he has contrast all in his ears, (because I have to force it down his throat during testing, because obviously wont drink it voluntarily) and I am beyond thankful for these things.

Thank you to those praying for our boy. It means so very much.

Nissen Surgery

2011-05-02T22:36:00.004-04:00

Here is part of an article I found on nissens. This is what Camden had at 9 wks old, but is still having complications. In his case this one is too tight which is causing some food to hang out in esophagus and not make it to his stomach. We never knew before because he has always been tube fed, but recently when he started experimenting with food we realized something was wrong. Several people have asked what it is exactly, so I thought I'd post this. Depending on what they see while inside him, this is pretty much close to the surgery he'll be having (again) this Friday in Gainesville.

What About Anti-Reflux Surgery?

Welcome to the first in a series of conundrum issues. The dictionary defines a conundrum as a question that has as its answer another question. A pretty appropriate word for a medical condition in which there are no cures, only a number of imperfect treatments and few occasions where the choice is obvious. As we said in the last newsletter, GER is a mystery disease in the what-do-we-do-about-it sense. A conundrum condition.

As we prepared to do this issue, the stack of articles on surgery that Joel gathered was impressive. No doubt, somewhere within it there are some good answers. But the more we examined our original plan to bring you a fabulous, up-to-the-minute description of all the anti-reflux surgeries, the more we realized what an impossible task this was. Our understanding of GER has changed dramatically in the past four years and the pace seems to be picking up. A thorough update on surgery would be outdated before you received it. (Not that we have the staff to write one - this took 2 1/2 months!) This issue of the Reflux Digest does give you some basic information on anti-reflux surgery but we have tried to concentrate more on how a parent makes a decision about surgery. A tough assignment but Caroline did a great job!

Introduction by Caroline

When Beth first asked me to write for the surgery issue, my initial response was very positive. I welcomed the chance to inform you, our members, about the very viable option of fundoplication; the life-saving potential, as well as the important negative complications that can occur post-operatively. As I read through the journal articles and drew on my family's two experiences with fundoplication, my response changed somewhat. I faced the great challenge to educate and inform you about the surgery, yet not alarm or persuade you one way or another regarding fundoplication. You, your family, and team of physicians need to make the choice that is right for your child. One must remember that there is no perfect surgery for reflux just as there is no perfect medication, and while it may be the only choice many of us have, we need to understand that this is not a cure.

"One must appreciate the scope and magnitude of this condition. " What a great sentence about such a complicated and frustrating disorder/disease. One I hope every family and physician remembers!

Caroline

What is anti-reflux surgery?

Fundoplication is the most common type of anti-reflux surgery and appears to be the only one currently done on children. The goal of anti-reflux surgery is to keeping food and acid from backwashing by using the muscles of the upper portion of the stomach (fundus) to help the sphincter between the stomach and esophagus (lower esophageal sphincter or LES) work better. The fundus is wrapped around the bottom few centimeters of the esophagus so that the contraction of the stomach muscles squeezes the LES just enough to keep it closed most of the time but still allow swallowing and belching.

The most important thing to remember is that surgery is a mechanical way to suppress symptoms of a disorder that is seldom mechanical in nature. Pharmacotherapy is also primarily an attempt to suppress symptoms. Neither is a "cure." Both have side effects / complications but so does uncontrolled reflux.

The Nissen version of the fundoplication (shown above) has been performed since the 1960's and more is known about its effectiveness than about newer techniques. The Nissen wrap involves bringing the fundus full circle around the esophagus (360 ) from the back (posterior) and stitching in the front. Other techniques are variations involving: wrapping less than 360 ; how much the stomach is pulled up and how much of the esophagus it covers; whether the stomach is fully or partially loosened from surrounding tissue (mobilized); precisely how damage to nerves is prevented; whether a tube is inserted into the esophagus to prevent over tightening of the wrap; whether the surgeon proceeds clockwise or counter clockwise; ad nauseam.

"Laparoscopic fundoplication" does not refer to the type of fundoplication but the type of incision made to access the stomach. In this technique a number of very small incisions are made in the abdomen and a fiber optic camera is used along with other special instruments. The smaller incisions drastically decrease hospitalization time because the incisions heal quicker. The actual surgery takes longer and is obviously a bit trickier to learn but many surgeons and patients prefer it. It is not clear whether total recovery time is shorter.

How Common is Fundoplication Surgery?

Anti-reflux surgery is the third most common surgical procedure performed on kids. Inguinal hernia repair, and central venous catheter placement are more common. GER, however, not the only reason a fundoplication is performed. It is done in conjunction with repairs of birth defects of the esophagus, after placement of a g-tube and it is more common in patients who also have other serious medical problems.

Have There Been Fluctuations in the Popularity of Fundoplications?

Improvements in any treatment can lead to a pendulum swing in favor of that treatment just as studies highlighting problems can provoke a swing away from a given treatment. Recent studies about the efficacy of medications may be provoking a trend toward surgery. A few surgeons are also questioning whether the results of surgery would be better if the patients choosing surgery were not already in such bad shape - certain technical variations can't be performed if the damage is too great. A valid question.

There are other anti-reflux procedures that are not often performed on kids. The Angelchik prosthesis is a silicone collar that is placed around the LES. Problems with them migrating and puncturing organs seems to be overshadowing any positive traits.

What are Some Indications for Anti-Reflux Surgery?

The decision to consider surgery is usually made if one or more of the following conditions is present:
Esophagitis - mild to severe damage to esophagus.
Apnea / Apparent-Life-Threatening-Event - cessation of breathing, possibly as a reaction to refluxate threatening the airway. An overly aggressive protection instinct can result in a spasm of the airway (laryngospasm / obstructive apnea).
Failure to thrive - failure to gain or maintain weight can eventually lead to developmental problems or compromise overall health.
Pneumonia / Asthma - aspiration of acid or acid vapors. May be a crisis situation if medication is not quickly effective.
Airway Damage - from acid exposure. Lung problems are not always audible with a stethoscope. Nasal polyps and vocal cord nodules are not always recognized as possible symptoms of GER.
Strictures - scaring of the esophagus. Often narrows the opening and interferes with swallowing. Often recurs even when GER is controlled by meds or surgery.
Barrett's Esophagus - precancerous changes in the esophageal tissue. May not be as rare in children as previously assumed. It is not clear whether a fundoplication will reverse or stop the changes.
Quality of Life Issues - pain that interferes with daily activities.
G-tube - surgically placed port for introducing food through the abdominal wall. Children who have one often develop reflux. This may be because the stomach is unable to move. New tube styles may help.

When Should Surgery be Considered?

The criteria for determining whether a child is a candidate for surgery are not set in stone. There are a number of questions that parents should discuss with their primary care doctor and all specialists.

? Is the GER causing damage that may not be reversible?
? Is the GER causing life threatening symptoms?
? Is this a crisis or is there time to explore options?
? Are symptoms not adequately controlled by medications?
? Do symptoms recur when medication is withdrawn?
? Have all medications and combinations been thoroughly explored?
? What is known at the present time about the long-term affects of medications?
? How does this compare with current concerns about uncontrolled, chronic reflux?
? Does full compliance with positioning and feeding techniques make a difference?
? Have helpful techniques been applied consistently?
? Is the child young enough that the GER can still be expected to resolve?
? In the parents' opinion, is the pain experienced by the child impacting on his quality of life?
? Is tube feeding a medical option and practical option?
? Has testing shown GER or the symptoms of GER?
? Have there been contradictory tests?
? Have any tests been suggestive of another medical problem?
? Have other conditions that cause GER symptoms been fully ruled out? (We will be addressing this in a later issue of Reflux Digest.)

Children with other serious medical disorders often have GER. Unfortunately, they are less likely to respond to medications and experience a much higher rate of serious complications with medicines, anesthesia, and surgery. Many of these kids are hospitalized on multiple occasions and compromised nutrition can be a complicating factor.

Children with digestive system abnormalities, cystic fibrosis, pulmonary disease, genetic disorders, neurologic disorders, seizures, muscular disorders, cyclic vomiting, allergies, conditions requiring supine or head down positioning, and kids with unusual posture (scoliosis, body casts etc) are all at risk for reflux and often difficult to treat.

? If the child has other medical issues, have you fully investigated the impact on all of the available options?

When is Surgery Contraindicated?

Children with delayed emptying or motility disorders are not good candidates for fundoplications. Fundoplication alone is not done on children with swallowing disorders because the food will not move into the stomach.

What Tests Should be Performed Prior to Surgery?

Sometimes several tests are needed to make this critical decision.

Barium swallow or upper g.i. - contrast x-ray done to rule out anatomical problems like large scars or a rotated stomach. If done on videotape with an experienced radiologist or speech therapist, it can diagnose ineffective swallowing which is a contraindication for anti-reflux surgery. A longer duration test can show delayed emptying.

Endoscopy / Esophagoscopy / with biopsy - fiber optic camera allows visualization of the esophagus. Some damage is visible with an endoscope but biopsies (tissue samples) can reveal microscopic damage. Incapacitating pain without severe damage may still warrant surgery.

pH monitoring - esophageal acid measurement continues to be the "gold standard" for diagnosing reflux. The major drawback is that a "positive" test reflects the number of events but even an isolated reflux event can cause life-threatening problems. Events immediately after meals or acid mixed with bile (alkaline) does not register but can cause significant damage. Conversely, high acid levels don't always cause damage. Portable machines are preferable because no hospitalization is required and they show more about reflux in real life conditions.

Scintigraphy / Milk Scan / Gastric Emptying study - uses a radio isotope to track how long food remains in the stomach and whether it enters the airway. Suspected or confirmed motility disorders are reasons to decide against surgery. A very traumatic test. Diagnosis of delayed emptying means other options or simultaneous stretching of the pylorus at the bottom of the stomach (pyloroplasty) need to be discussed.

Manometry - measures the pressure of the sphincter areas and the effectiveness and coordination of peristaltic action that moves food the correct direction. Still mostly a research tool.

Allergy testing - neither traditional or nor non-traditional testing are recommended very often by the experts but it is strongly suggested by many of our parents. [See the letter below.]

How Effective is Surgery?

This is a difficult question for anybody to answer. It is measured differently by different researchers. Whether or not refluxing is totally stopped can't be known for sure because only those patients with significant symptoms after surgery are retested. Many patients do not answer follow-up questionnaires. Whether or not the original symptoms subside seems to depend somewhat on how severe they were, which symptoms they were, and whether there were coexisting medical problems. Many studies compare the outcomes of specific surgical techniques but this also influenced by the surgeon's skill and experience with the particular technique. An individual surgeon's success rate also depends on the ratio of low risk and high risk patients he or she takes.

The percentages vary drastically depending upon the specific studies you read and how healthy the group was:
A " successful result " or complete cessation of symptoms gets percentages from the mid 50's to upper 80's with most studies reporting numbers in the higher part of this range.
A" good result " or a substantial improvement in symptoms is reported at about 10-20% of the time.
A " poor result" is variously defined as "minimal or no improvement in symptoms," "worsening of symptoms," "occurrence of new symptoms," or "disruption of the wrap." This gets from 0-15% overall but special populations have high much rates of poor results.
The re-do rate is 0-15% for disruption of the wrap.

Keep in mind that a child with multiple illnesses that contracts pneumonia twice in the follow period may negatively affect the statistics yet that child may have had more cases of pneumonia or died without surgery.

None of these address parents' most burning questions because very few studies compare surgery to medical management. The effectiveness of medications is not as good as we would wish, and some new studies of long-term results are depressing. The likelihood of a good outcome for your child is something to discuss with your child's doctors.

What are the Complications of Anti-Reflux Surgery?

Every case varies, but aside from the usual surgical risks of anesthesia, infection and accidental damage to the tissues, some complications may include:

Small bowel obstruction - scar tissue adhesions form in the abdominal cavity as a result of many surgeries. For some reason adhesions are more common after any anti-reflux procedure and if they block the passage of food through the intestines it can require emergency surgery. The "typical" symptom of an obstruction, vomiting, may not happen after a fundoplication so patients and families need to know what else to watch for. Any signs of an obstruction need to be investigated immediately. Adhesions glue parts of the body together that are supposed to be separated and can be responsible for pain that is perceived in the left shoulder and other odd sensations.

Disruption of fundoplication - the stitches come undone and the stomach returns to previous position. Most reports in the literature involve falls and other accidents. Some parents report that a good case of the stomach flu or food poisoning will cause retching violent enough to pop the wrap.

Hiatus Hernia - the junction of the esophagus and stomach slides through the diaphragm into the chest cavity. Lately, more care is being taken to anchor everything securely and minimize the size of the opening in the diaphragm separating the abdominal cavity from the chest.

Stricture - scarring and narrowing of esophagus. Most often this is a recurrence of a scar present before surgery. Even stopping acid exposure totally doesn't always prevent a recurrence.

Obstruction at fundoplication - esophageal motility is present but the food can't pass into the stomach

Delayed gastric emptying - the stomach may be slower than before at sending food to the intestines or a delay that was not a big issue before can be come a real problem. Pyloroplasty promotes faster emptying.

Dumping syndrome - rapid emptying of the stomach causes symptoms including severe nausea, abdominal cramping, retching, pale skin, and sweating. Diet changes may help. Routine pyloroplasty is not favored because dumping may occur.

Failure to eat solid meals - liquids and foods are introduced slowly after the surgery. Certain foods may not be tolerated. A naso-gastric tube may be placed to enable a slow drip of formula into the stomach or IV nutrition may be used. Both fear of choking and current pain may be problems .

Gas bloat - inability to belch means gas must travel the length of the intestines.

Retching - "dry heaves." One parent described as "watching an invisible bully punch your kid in the stomach - repeatedly."

Dysphagia - esophageal motility is diminished and swallowing is affected. Great care is taken when working near the nerves that control swallowing. Low motility and a new wrap means food gets stuck in the esophagus. This had been more commonly reported with laparoscopic procedures and techniques are being modified accordingly.

Tube feeding dependence - if children are fed by tube after surgery, it can be difficult to convince them to resume eating. (See letter from Mary Gillman below.)

Ask The Doctors - interviews with two doctors

Kathryn Anderson M.D., Chief of Pediatric Surgery, Children's Hospital Los Angeles, CA (CHLA)

Q - As a pediatric surgeon, what indications or criteria must a child meet before discussing a fundoplication surgery for GERD?

Before considering gastric fundoplication, a child must have clinical evidence of GER which may include one or more of the following: vomiting, malnutrition, failure to thrive, developmental delay, esophagitis, esophageal stricture, pulmonary complications such as aspiration pneumonia, asthma, restrictive airway disease, chronic cough and apnea.

Reflux is associated with a variety of neurological diseases. Children who have cerebral palsy, Downs syndrome/chromosomal anomalies, hydrocephalus or severe head injury should be suspect for GER although they may not exhibit the common clinical signs or symptoms. These children may ruminate or have a history of vomiting with bizarre neck and torso spasm referred to as Sandifer's syndrome.

When GER is suspect, one or more of the following studies may be ordered to confirm diagnosis: Esophagram with gastrointestinal follow-through ("Upper-GI"). This is most common of radiologic studies to evaluate for reflux. It will also identify other anatomic problems which may cause vomiting. The study has its limitations as it only identifies GER occurring at the time of the study.

Gastroesophageal scintiscan. This is a highly sensitive radiologic study which will identify GER as well as measure gastric emptying time.

24-Hour pH monitoring. This study may be ordered in difficult diagnostic situations. A pH probe is placed in the distal esophagus via the nose where it
remains for 24 hours measuring the number and severity of acid/alkali reflux.

Esophagoscopy. If a child is still suspect for GER despite negative results, an esophagoscopy with biopsy can identify the presence of esophagitis secondary to reflux as well as complications such as esophageal stricture.

It is important that the above tests be done by a qualified individual with pediatric experience for accurate evaluation.

Treatment is dependent on the age of the child and the severity of symptoms. Infants often have reflux which resolves by 6-8 months of age. Unless GER is severe, medical therapy should be attempted prior to surgical corrections. This may include smaller feeds given more frequently, thickened feeds and keeping infants in a prone upright position to minimize reflux and promote gastric emptying. Infants and children may be started on medications which increase the pressure of the distal esophageal sphincter and promote emptying of the stomach if dietary measures fail.

If, despite medical management, the child still has evidence of reflux, then surgical correction of the problem is appropriate.

Q- Could you briefly describe what fundoplication surgery is, the average hospital stay, and the average recovery time?

Fundoplication, simply described, is a surgery which mobilizes the gastroesophageal junction below the diaphragm to increase the length of the intra-abdominal esophagus. The upper portion of the stomach (fundus) is wrapped around the esophagus to create a valve-like mechanism which prevents the reflux of stomach contents back into the esophagus. The stomach may be wrapped completely or partially around the esophagus in varying degrees. The different degrees and orientation of the wraps are referred to by separate names.

The average hospital stay following a fundoplication is 4-5 days, and is dependent on the child's ability to return to full feeds either by mouth or gastronomy tube if one has been placed. The child should be essentially recovered in approximately 2 weeks.

Q - What are the most common complications post-operatively?

Complications which may occur vary in severity. They may include:

Inability to begin or advance feeds orally or by gastronomy tube due to a delay in intestinal function following surgery. This may present as abdominal distension.
Inability to begin oral feeds due to post- operative swelling at the surgical site. Food will pool in the esophagus and not pass into the stomach causing the child to gag and vomit. This situation usually resolves within a few weeks.
Inability to tolerate full feeds as the gastric capacity is temporarily reduced after surgery.
Retching.
Slip of the wrap above the diaphragm.
Disruption of the wrap.

Gainesville appointment updates....

2011-04-26T19:43:00.003-04:00

Camden is scheduled for surgery next Friday to have his nissen re done. (The nissen is the top of the stomach wrapped around the bottom of his esophagus- the one he has now is too tight) This will involve opening him up for the third time, throught the same scar. Food can not make it to his stomach so if he is going to eat by mouth one day, it seems to be our only option.

For my friends who want more details:
We looked at his esophagram with Dr K today and it looks like a normal esophagus until right above the nissen it sort of "bells" out. That seems to be where food is hanging out and is getting stuck, and then not even making it through the nissen. This will be his third nissen related surgery. First one too loose, second is (obviously) too tight...( so this upcoming one should be juuuust right....?)
I also had concerns about his Mini One button. It has seemed for a while now to look as if it was being pulled up inside him. Well, it popped out other day and the balloon looked crazy. The last one looked crazy but this was way worse. Most seem to think it is a bad balloon, but I dont know. Did i actually get 2 bad buttons that were ordered mths apart? Seems odd to me...but IDK.plus how it looks like it is being pulled is strange. It was actually FLATTER on the left side when it first fell out. We gave Barney gtube surgery and I took it out to take this picture. It was actually trying ot go back to a balloon shape here. Anyway Im not worrying about it since he is having surgery Friday.

* Testicles and closing trach hole are being put on the back burner, once again. It was nice for while to be able to think about tackling them, the "smaller" surgeries, but once again greater problems have arose.

I am not RUSHING his eating. I am not anxious to get that tube out. This kid used to dry heave at the sight of food or over things in his mouth, and now, 2 yrs later he is wanting and ASKING for food and I have to tell him no. I feel we are going to miss our window of opportunity. he is confused. I am worried about his poor esophagus and I am dreading this surgery. I just pray this is the 'fixer'....

These are my favorite posts to share....

2011-04-24T22:04:00.008-04:00

These are pictures of Camden's first three Easters. Every year, he has one less tube. Every year he is stronger. He couldn't eat today, but he was breathing on his own this year. So very thankful.

Happy Easter & thankful that we serve a God who is alive and real.

And it's stuck.....

2011-04-08T22:23:00.002-04:00

Camden tried some very soft potatoes for dinner. Marcus had just got in from out of town and asked if food was staying down. Few minutes later, the gagging and choking began. All the kids stared, I cried, and my husband looked at me like, "I thought you just said things were staying down?" Im extremely bummed, but I knew that thing might not work out. So, it seems his whole last surgery was almost for nothing, but that is the CDH roller coaster. Im seriously trying not to dwell on it and move on to the next step.

On a good note, this kid is talking like crazy and probably has said 10 new words this week. He is amazing me everyday, and even tries the sounds when I correct him on words. He is also doing many two worded sentences like "baby pig" (for Olivia lol) and "hi, ____" He is also starting to copy us. He copied Micah saying, " no way!" It is so neat to see him sprout! Im really thinking we are the best speech therapists for him. ;o)

Please STAY DOWN.

2011-04-07T23:05:00.002-04:00

Food is making it to stomach, and he hasn't choked it back up. This happened last time for a few weeks, then got bad again. So, I praying that this time it works. He has been snacking on things through out the day, not a lot of calories, but I give him a lot through the night. Just letting him experience hunger again and hoping he doesn't have another set back.

He is all pretty healed in the boy department. Still a bit bruised but the boy never complained. Never. I bathed him today, a day earlier than drs orders, but I couldnt take it anymore. When he woke up this morning with stomach contents everywhere ( med port on gtube fed the bed, again UGH) a bath was needed asap!

Surgery Update...

2011-04-01T19:10:00.002-04:00

well, there goes my trying to kill 2 birds with one stone. First off, he was dilated, but Dr K says things are "tight". I shared with him that things have recently gotten worse this week too. We will discuss things at the end of this month. Is this working? Or does he need to be opened up AGAIN. I dread that, and I'm tired right now and don't want to think about that so I'll move on....

His testes didn't go so well either. Oh, Camden, my child....can things be "easy" with you? =p One was brought down and Dr K said it was tedious and he feels we should go back to Nemours and have our urologist do the surgery. Surgery took longer than I expected so I was antsy. Difficult thinking about him being intubated and now we have to do this all over again with his testicles, which by the way look so pitiful. Another surgery, with more bruised peepee. My poor baby.

But, he is fine. He got a little sick when I just tried to feed him, so I had to vent his gtube and let things out, but he is doing better. Just wanting him to heal up and we can think about this stuff in a few weeks. Tonight I am thanking God for my baby's lungs, good airways, and healthy heart. *Focusing-on-how-far-we-have-come*

Melt my heart....

2011-03-28T19:46:00.002-04:00

Today when I went to get Camden from his crib he said, "Hi Momma!"

When he left the room we were in he said, "Bye, Momma!"

Just a while ago he laid his head on my leg and said, "My Momma"

I am loving the 2 worded sentences and loving how he is understanding how to use them. Precious.

We are still on for surgery this Friday. We will have to leave around 4am for Gville. Eek! But we have to try to get things fixed. Camden is begging for food and I am constantly having to tell him no. Something is wrong with this picture! =0( Also, the choking is getting worse, again, so I am thinking this stretching is going to be the answer, but we will just go day by day and see. I dread him getting another major surgery, but getting stretched/intubated all the time isn't good either.

Also his testis will be brought down so please pray that he isnt hurting too bad afterward. =(

Gainesville appointment updates....

2011-03-15T22:10:00.002-04:00

Saw Dr K and Dr J and long story short we are having surgery on April 1st. Camden will be getting another dialation on the nissen and will be getting the family jewels put where they need to be. =0) Dr K asked me if I had anymore ?s and I said, " Yeah, while he is intubated can ya fix the testies?" I am always trying to throw the little things in all his surgeries. He said sure ( what a man of many talents ) and I was grateful. I hate HATE my post trach baby being intubated. Especially since he just was intubated in Feb with the last dialation. And the fact that he had major airway and respitory issues doesnt help. Trying to focus on the fact that he is healthy and doesnt have breathing issues anymore. He is GOOD! Once you've had a vent/trach baby it can be so difficult to realize that their breathing is GOOD...as strange as that may sound. It doesn't get easier with these "easier" surgeries, even those this is nothing compared to what he's been through. BUT fear tried to creep in. I found myself crying off and on during the 1 hr 45 min drive home. I looked back in the rear view mirror to find Camden jamming out (with a ball cap on backwards) to the music. Still to this day, he is filled with JOY and oblivious to what is going to happen, and probably wondering why his mom is crying again. =0)
God will, as always, carry us through.

Bottles at 2?

2011-03-14T21:04:00.003-04:00

Yep. But that is ok, because I have a plan. ;op

He cant do real solids due to his nissen being too tight. We go to Gville tomorrow to talk with his specialist and GI so we'll know more then, but for now I have decided to stick with liquids and baby foods. I have to do something to get him in the right direction for eating orally! It seems there is always a setback. He doesn't have a problem getting liquids/soft food down, so 3 days ago I decided to stop feeding him through the tube during the days and just do night feeds. (he's been on night feeds anyways for lost day calories since his tummy cant handle much at once) I found a bottle that was really flimsy and soft. I need to use something where I can lay him back, put on a video and keep him distracted. He CAN suck a straw, but he is not going to keep sucking one for me. I thought about a sippy cup, but those are too bulky and he isnt going to go for that after a while and I knew it would take him some time to get a couple ounces down. So the bottle it is, and I even had to make the hole a little bigger.

It takes the kid forever to get hungry. I just didnt feed him and he played and acted like things were cool. So I finally laid him down and attempted to feed him. He fought me but I would just keep him distracted and kind of force him in a nice way. =p Long story short, in the last 2 days I have gotten 2 cans of formula down him which equals 16 ounces each day. This is GREAT. This is SOMETHING. Sometimes he'll do 2-3 ounces at a time. He always tries to quit at one ounce but I make him continue. Well tonight he did 5 ounces in one sitting, tried to stop twice and it took an hour, but he did it. That is what I give him for a feed, 5 ounces. So he did his whole feed orally!

I know Camden, and he'll get used to the eating idea and we can slowly switch to sippies etc. when his insides gets stretched again we will start doing more table foods again, which he prefers anyways. For now Im okay getting the calories down him this way. I never got to feed him at all so it is really okay for momma...

Bad thing is he cant have milk and soy makes his stools SUPER loose. GROSS. I usually make him a blenderized diet but forget him chugging that down so I have been giving him the formula to drink which means lots of loose stools.

Swallowing update and ENT visit

2011-03-06T20:44:00.004-05:00

A little update on Camden's swallowing. The stretching has helped. He still has little spasms every now in then and sometimes hacks things up, but compared to what it was, it is much better. WE go to Gainesville twice this month, so we will discuss if further stretching is needed...

Went to Jax for ENT visit. Basically we were going for a follow up and to talk about closing trach. I have signed the pre op papers and we are ready to go BUT he doesnt want to close it up until we are sure Camden wont need surgery with these feeding issues. He doesnt want to do the trachea surgery and then they have to intubate him so, that sounds good to me. The hole isnt harming anything. =0)

Camden is into everything and just enjoying being "2" We bought undies and he did pee one morning, but I knew he had a full bladder so we caught it just in time. He is a little on the immature side, ( to be expected) so he doesnt have to do mommy's potty training boot camp like his siblings did. He gets to take his time. Im thinking he deserves that. ;o)

He is really into animals these days so while in Jacksonville we used our passes to stop in the zoo. He was beyond excited!! If you look closely in the pic above, you can see the gorilla he was looking at.

Precious Maggie

2011-02-28T12:49:00.001-05:00

...lost her battle to a mito disease. She is in the arms of Jesus now. Please pray for this family as they go through this tragic time.... ;'(

Prayer request

2011-02-25T21:54:00.002-05:00

We love you sweet Maggie and are praying for you tonight...

The Agnew family needs, more than ever, prayers for peace as their baby girl is not doing well tonight. We have been following their blog for a while now and have grown to love sweet Maggie.

She is one of my followers "Agnew Family blog" if you would like to read her story...

Please pray for this family tonight.

An answer to the problem!

2011-02-10T15:07:00.002-05:00

Hate that there is a problem, but now we know why.

Camden had his endoscopy yesterday. Had to be put under which completely broke my heart. Brings back horrible memories of him being intubated for 9 long weeks. Hated to see him wake up raspy and sore and crying and MAD. Kicking at the nurse when she walked towards him and his papers saying, "child resistant to vital signs" LOL It turned out to be an 8-4pm ordeal b/t the waiting and then the unexpected findings.

They called me the first time and told me that the camera would not make it through to the stomach. The nissen surgery he had done a while back is too tight which totally explains why when he eats things get stuck, fill his esophagus up, and then come out....undigested. It didn't surprise me. Those are crazy surgeries and I always suspected something was wrong there, although with all the retching before I thought is was too loose. But nope, too tight.

SO
Dr J called Dr K down to dilate that area. Unfortunately that did nothing because as soon as Camden tried a few noodles last night we were back to how things were before. =( Dr J did say we may have to do the stretching a few times. It is that or open him back up. I'm thinking we are going to end up with another surgery, but I'm not the Dr and could be totally wrong. I hope I am.

SO
we are home and he is fine....but can't eat. He has been so whiny and clingy for a while and it seems it started the same time he started to want to eat. I think the kids chest is hurting. I know mine would!

SO
thanking God for answers as I was in fear there wouldn't be one and I would be the over exaggerating mom...again. Now we move forward on getting things to work and getting him to eat. Follow up appointments in March.

I'm telling him no to food and it is killing me. (My baby is finally wanting to eat!! I still can't believe it...but I have to say NO! ) He doesn't realize that is what is making him sick. I'm trying to get him to drink more, but he isn't too fond of it. Liquid actually comes up sometimes too, but it has a better chance making it down.

So...that is where things are as of now. A little bump in the road...

More testing...

2011-02-03T22:06:00.002-05:00

Cant remember if I shared already, but the upper GI and esophagram both came back normal. GREAT! BUT, the puking up this clear, sticky mucus is getting worse. He can't eat, but wants to. He takes tiny bites here and there, then he does weird clearing his throat sounds (sometimes) sometimes gets the hiccups for a few minutes, gets upset, gags and pukes this mucus right up. In the last three days he has done it 6-10 times each day. Weird, and I cant figure it out. I emailed the Dr all this information and suggested (as much as I dread it) getting Camden an endoscopy and he agreed. So next Wednesday we will be heading to Gainesville, once again. We are seeing a GI there who has been great too. That is something to be thankful for ....we have always been blessed with wonderful drs and specialists.
So, that is where we are on the CDH roller coaster this week....

2 year old updates =)

2011-01-27T17:07:00.009-05:00

It's been a long two years and you have been such a fighter.......

Camden turned two last Saturday!! He had a huge celebration, and Barney himself showed up. =) At first Camden was a little freaked, but it didn't take long before he was dancing with Barney and was very sad when he had to go! The party was perfect and I was overjoyed with all who came to celebrate my babies life.

Camden has TAKEN OFF in the past few weeks. He had his other testing done (esophagram) and everything looked fine, so there is NO restricted esophagus like his momma, (thank God) and he hasn't had any choking in the past 5 days. He is begging for food, mainly rice, and today he has consumed over 5 animal crackers. Honestly I feel like I am in a dream and have waited for these days for a long time. I have decided not to tube feed him a lot through the day so he can feel hunger and he seems to somewhat be associating it with food. He will sit in his highchair and try and eat rice for an hour. I am sitting with him and encouraging him and praising him. He loves the praise and wants us to clap. His siblings have been WONDERFUL. They are the best speech therapists!

**sorry so many details, but this is his "baby book" ;o)

Physically he is doing great. I haven't been connected with any therapists since we moved due to everything going on, but plan on getting him evaluated. He seems to be right on target physically. I have watched other kids his age and notice a few differences but nothing that he won't be doing soon. ex: sliding out of a chair or climbing stairs. He can do it, just not as fast.

Speech is starting to get better but yes, way behind, which is to be expected.
He says:
Momma
Dadda
Nana
Bubbas ( brother )
bubbles
Mo (no)
Pees (please)
baby
mmmm (yum ;op)
Bye

can sometimes do a P sound and did a short A sound last night. In time....

He is signing:
please
thank you
mine
momma
dadda
nana
Barney
no
blanket
tree
dog
cat
outside
boy
good
yes
bird
wind
sun
rain
car
apple
food
drink
cracker
cookie
rice
I love you
night
day
sleep
baby
light
sky
bubbles
on
off
Bye

He knows where his nose, eyes, hair, head, mouth, tongue, teeth, feet, and bellybutton are.

He WILLINGLY let me brush his teeth for the first time this week. =0)

Weighing around 24 pounds and getting back to be on the skinny side, but we are focusing more on learning to eat, not gaining weight. He is still on a continuous feed of formula for 8 hours through the night.

We continue to get an RSV shot each month through the winter. He has had one cold this winter and did fine. He still is on an apnea monitor and has a pulse ox for stand by. Mommy is going to have a difficult time handing them back to the medical supply company. No O2 needed since trach was taken out. Still off albuterol but I did give one treatment when he was sick few mths ago.

Like I said....he is taking off!! I am so thankful to God to be able to watch him ENJOY life like he does.

Upper GI and Gastro

2011-01-18T20:39:00.002-05:00

We headed to G-ville today to have upper GI and then see the gastro. Camden still hates upper GIs just as much as he did before. He let us know this, poor guy. Nissin looks good, no reflux.
So then we headed to GI to address his oral aversion etc. Well, that is why we had the appointment in the first place, but let me back up....

Camden has decided to really take an interest in eating and drinking. He will eat rice now and drink out of an Elmo juice box. OK, I am so overjoyed and beyond excited AND so happy to be seeing this.....but, he is having some swallowing difficulties. Ex: He ate a tiny piece of ham one day then the next day he ate a few tablespoons of rice. Then he gagged and hocked up all the rice AND the ham from day before. This has happened a few times so in my opinion things arent making their little way down the esophagus. So Dr doesnt want to pursue eating ( wants us to be gentle) until we take Camden in for ANOTHER upper GI next week. This time with an NG tube to see the throat since he wont do the barium orally. Today we just did it through his gtube. We couldnt do it today because he had already started to eat his new addiction. (rice)

Let me add: Dr thinks this is NOT CDH related because I have a restricted esophagus, esopagitis, hiatal hernia etc blah blah blah so he believes this could be hereditary. UGH! Let me add to the problems =( But we wont know anything for sure until next week.

On a good note.....we are having a bday party for Camden this Saturday. Mommy has invited everybody and it is gonna be a good old time of celebrating Camden! I was too nervous to have a big party last year, so Im braving the germs this year. =) It is gonna be great!

January

2011-01-05T15:21:00.002-05:00

Christmas was wonderful and we got through part of the winter without being sick...until New Years. Funny thing everyone seems to be doing better than mommy. Thankfully, it is just a bad cold.

Camden battled it for about a week and did pretty well. Ran fever for a day or so, battled the snot, and coughing here and there, but he seems to be ok!

As for the retching, this feeding plan has continued to be perfect. No retching. NONE.

He has received 2 RSV shots so far, and is due for one soon I'm sure. My insurance has surprisingly been great so far this year! One less little stress to deal with. Those are nice little surprises.

He has been working on the "N" and "D"sounds and just about has them down. So now he can do, "B", "M", "D", and "N"

So words are still few but we have momma, more, bubba, uh oh, mo, (no), nana, and finally dadda! Still has a hard time with nana and dadda, but you can definitely tell what he is saying!

I finally made a video for Camden. If you get a few minutes you can check it out. I can't believe he will be two this month.

A New Kid....

2010-12-14T15:32:00.002-05:00

We went to see Dr Kays and let's just say he is amazing. It is so unbelievably wonderful to discuss Camden with a Dr who knows CDH and has dealt with 250 other CDH kids....

So there WAS something wrong....thankfully not a huge deal. =) He was being fed too much food at each feed. I have always worked with a nutritionist since we've been home but how were they to know? They definitely tried their best to help me with feeds. I never would have thought it was all due to the amount in each feed. He was already getting less than most kids his age. I have slowed his rate down to 2 hrs before and it still didn't help! Not only that, but back when he was getting less, he was still retching due to the milk allergy! So, Dr K cut his 5 feeds a day back to 4 a day shaving off around 50 mls each feed, then going back to an over night feed to make up for loss calories at 400 mls at a rate of 50, so over 8 hrs. Ew to all night feeds again. Yea to CAMDEN HAS NOT RETCHED ONCE since last Tuesday!! We are doing my blended diet for the day feeds, and back on soy formula at night. I was scared since he retched so bad with it but it could've been just from being over fed. So far he has done well with the formula. I am seeing a few hives here and there. Hardly any though, so I am hoping he continues to tolerate the soy formula and we go on retch free. (Potty training is looking further and further away with 400 mls given through the night....holy moly huge pee diapers in the morning. = S )

So, just in this week since he has felt better he has been babbling up a storm, tried around 25 grains of rice and 3 sketti noodles. =0) When he is sick he keeps that mouth so guarded, wants nothing around it, and hardly speaks. So hopefully we will see new things to come with Camden.

Gonna do an upper GI soon and xrays every 3 mths for this year. Dr K explained things to me so clearly and helped me feel more comfortable with some of the fears we had. Poor thing probably wasn't expecting to do counseling sessions.

It is so nice to see him up and running, testing me, telling me, "mo!", throwing fits, laughing out loud, trying to sing..... It has been a while and I have never seen him retch free for a whole week. Exciting!

Gainesville is a little closer and we are looking forward to Camden's new care. Very strange not going to Jax as much. We will always be so very grateful to Wolfsons Children Hospital and all the Drs that saved our baby's life! God opens the doors needed....

Good stuff =0)

2010-12-01T23:04:00.002-05:00

Got an appointment with Dr Kays on Tuesday! That is the good stuff... =0)

Camden is doing better this week......except for feeding time. He is eating over an hour and a half each feed and retching bad and just wants to lay. He may sometimes get a break from the retching once/twice a day out of the five feeds, but he still is cranky and wants to be still during that time.
Had a little more energy the last few days and it was nice to see him up, smiling, and trying to talk. He doesnt get too much free time with feeds taking so long. Im trying to get the calories in, but every night I have been turning off the pump when he isnt quite finished. I cant stand watching him lay there and retch while he tries to go to sleep.

It continues...

2010-11-29T10:15:00.003-05:00

I am going to try to be fast. I feel like all my last posts have been about Camden's retching. I have lost track of time with it. I am always wondering if it is an allergy (since milk made him that sick!) and I do a rotation diet over ...and over again for months. It has been going on for a really long time but then a few days before Thanksgiving it got really bad. He couldnt sit up from being so worn out. He sometimes retched 3 times an hour. He retched through the night with an empty stomach. I just didn't have the heart to put him on his continuous feed at night. He was down to 3 feeds a day at THREE hrs per feed...STILL retching. This really bad phase last about 4 days and I even took him in the ER scared for him. I am not going to get into on here because I dont think it is the right place to do so but after driving 2 hrs and waiting their words were, "we have nothing to offer you" and " he looks fine on daddy's lap and he isnt in any resp distress"I cried and cried. They finally gave me an xray which turned out ok.

I took him home and I cant remember the last time I was so hurt and upset. (Like I said there were other things said to me.) He had another rough day then the next night he had the hugest bowel movement and was so much better...? Yesterday, he was great and back to himself then last night he retched worse than Ive ever seen. There is something wrong. If I hear someone tell me it is a flu again, Im going to scream. Or that Ive skipped speech therapy for two mths, or that I havent tried a new med my surgeon offered me to try....(I want to find out why he needs the med first. ) And no, not one of my family members have been sick with a bug & and has skipped speech because we moved and I was giving the kids a break with all the retching.

He also sometimes make a popping sound when he retches which scares me too. I think he needs a CT. I have found several cdh babies that had reherniated and were even in the hospital due to being so sick and the xray looks clear so they dont think reherniation. Finally a CT is done and there is a stomach up in the chest cavity. I am not saying he has reherniated, but just to rule it out....?

I know he is in pain. Even yesterday when he was doing very well he didnt want me or my mom. Hasnt really wanted to come to us for days. This is strange...he absolutely loves his Nana. She thinks it is because he is mad we havent made him better. :( I dont know. He is very irritable and you can tell he tries so hard to play but something is bothering him.

So here we are today and as I have typed this he has retched with half his feed going in him at a slow rate, and he wants to lay down. He just got up after sleeping 12 hours. Something is wrong. I keep thinking I am going crazy. Im so glad we live near my parents so they can see it. I am so glad my BF was here during Thanksgiving week and witnessed it. If everthing was ruled out and I knew this was going to be his life, and there was no fixing it, I would deal. But I dont think that is the case.

So, I had Camden's ped give him a referral to go see Dr Kays in Gainsville. Waiting on them to call me with an appointment. I am hoping we can look into different things and I am looking forward to meeting him. He deals with crazy CDH moms all the time, so Im sure he has seen and heard it all. ;o)

I have to go day by day and count my blessings. (Dont get me wrong, when I was on the side of the road for two hrs with a flat on the way to the ER ....watching my baby have 3 horrible retching episodes I had a pity party.) I have to continue to keep looking at things with the new perspective Camden has taught me. I have to ask for forgiveness for being ungrateful and thank God my baby is here. Everything's going to be ok.

Camden in November

2010-11-13T20:34:00.002-05:00

Hi All. =0)

I havent been able to log in due to some computer problems, but there isnt much going on. Camden is growing and starting to babble more and more. Words are soon to come. Still a lot of closed mouth humming.

We did go see his surgeon, Dr W, and she IS leaving. I am so saddend, but wish her the best. It was so hard to hear her actually say it. WE LOVE HER! We are now thinking about going to Gainesville to see Dr kays, and it is actually closer to us now that we have moved. If you are a CDH mom, you know who he is, but for the others he is a DR that specializes in CDH kids. With DR W leaving we are thinking we need to get established with someone else and she is going to be hard to replace. We think he will be the next best thing! ;o)

Camden is gaining ok, but the retching has increased to where it is a struggle to feed him. He is back on the pump and it seems like he lives with the Infinity back pack on. I have done rotation and food allergies arent seeming to be the problem. (besides the milk and soy of course) I am going to continue rotating his food so we dont acquire another allergy, but the retching situation is something else. And no one knows....not even me. I know it is just how he is working...due to surgeries? But what exactly? So I am going to try to stop dwelling on it and trying to figure it all out. I have to put it in God's hands, but it is so hard to watch your baby dry heave through out the day. He still does not want to eat, but did put a grain or two of rice in his mouth. Just depends on his mood, but two grains of rice just isnt gonna cut it! ;o)

AMAZINGLY our private insurance decide to cover Camden's RSV shot for this winter! We were in shock as this shot is outrageously expensive and usually they give you a fit when your Dr orders one. We are heading to Jacksonville Tuesday to get it and maybe a few others while there. We also will meet with his RT from his medical supply company. They kept us with them knowing that Id be in and out of Jax which was nice.

Just trying to stay healthy through the flu season. Our new church is super tiny, so that is good for us these days. =0)

I continue to thank Jesus for Camden's life...daily. He is so precious and has the funniest personality on him! Pictures and hopefully a video to come. Take care all....and thanks for checking in on us.

The endless feeding drama

2010-10-22T11:41:00.003-04:00

After upper GIs, xrays, ( we went again the other day and all is fine) I have come to realize that Camden just can't tolerate his feeds. Yes, he has allergies too, and there may be some I havent recognized yet, but after a rotation diet he is still wretching. We are back on the pump and still using 60 ml syringes ( taking 20 min breaks in between each)but I am now feeding him over 45 minutes on an average. It is helping, a lot. He did have one bad episode today, but we found it was because he was laying on the bed flat and being tickled. BROTHERS! =0) Anyway, it is helping so that is what we have to do. I am not understanding how we worked for so long to get his feeds through faster, and not we are back to this?? I just knew as he got older things would get better. It worries me about his future with eating, especially when he is still not taking any calories by mouth. Trying not to get discouraged and just focusing on how well he is doing over all!

A cough has settled in his chest from the cold he got a week and a half ago, but the wheezing is leaving and he is doing ok. =0)

He is also finally gaining weight. I have been using different things, and substituting sunflower butter, honey, and garbanzo flour in his rotation diet and it is slowly bulking him up more.

Above is a pic from today...sorry about the quality. Mom's camera was on the wrong setting. ;p

Happy bday to my 14 yr old, Justin and my 6 yr old daughter, Micah!

sniffles

2010-10-14T22:00:00.002-04:00

No one else, but Camden. He seems to be kicking it ok. Sleeping a bit more, and tonight he had a neb due to a little wheezing. That is the first one since last winter! Hopefully he will just get better fast, and it wont turn into anything. =0)

Tonight he said his third official word, "More" It is too precious and the lip formation he does with it has us laughing so hard. It is so neat to hear!!

ENT visit was fine. Ear tubes still in place and trach hole being left open for now.

We traveled to Jax yesterday to see his ped. I shared the food allergy issues, and we are going to rotate his diet to see ho that works for him and also to not create more allergies like I did with the soy. I am alternating hemp, rice, almond, and coconut milks ( with a lot of other things added to it). I havent tried coconut or almond yet. He did gain weight with the extra olive oil I have been putting in his food and made it to 23 pounds.

We found out that his precious surgeon, Dr. W is leaving. I was so upset to hear this. She is one of a kind and we will feel a great loss when she is gone. I cant begin to express the gratitude I have for everything she has done for Camden. God used her in a mighty way for our family, and we are so thankful. I go to see her on the 26th of this month and am hoping she has changed her mind. ;o) Well, you never know! =0)

Physically Camden is catching up. We are in a two story house now, and if we allow him, he will climb right up the stairs. I still have to look into getting speech over here now that I have moved, but have slacked in that area. He still doesnt take in any calories by mouth, but continues to lick things when in the mood. Still signing for communication too...

Camden has adjusted well to his new place. He still sleeps in our room and still uses the apnea monitor at night. He loves seeing his Nana and Papa on a regular basis too! We are really liking our new little town.

Quick Update

2010-09-23T21:08:00.002-04:00

Still busy packing, and now we have decided to move out this Saturday so Im not finding myself on the computer much. =0)

As for Camden we are still doing the hemp base diet. Wretching a little bit, but definately cut back a lot! I am thinking it is just a lot thicker and heavier on his stomach. He has gained a little bit too. Up to a whopping 22 pounds, same has his younger 10 mth old cousin! ;p He is not tolerating more than 8 ounces at a time. If I try to do just a little more, he gags.

We saw pulmonology today. Camden looks great and we dont have to go back for another 3-6 mths. She said just to call and try to get all my appointments together since Im driving almost 2 hrs now. She gave me another order to continue the apnea monitor and emergency oxygen to have on hand. I am so thankful for this. I can't imagine him sleeping through the night. I know those fears will slowly go away, but especially with his diaphragm already re herniating, I have my concerns for sure.

No more words, but is officially saying the "ba" sound. Still continues to sign as communication, and that is just fine with us as we wait for those words to come.

Still no eating, but licking more and wanting to taste everything, which is super hard now with the allergies to soy and milk.

We go see ENT tomorrow and I will try to post an update. If not, we will "see" our fellow bloggers in a week or two when we are settled. =0)

Busy with moving...and a little update on my boy...

2010-09-11T23:24:00.002-04:00

We have decided to move to Madison County, Fl. 2 hours away. Will will still drive here to Jacksonville for Camden's doctors, of course. Things have just happened so fast and easily and we will be moving Oct 1! Glad to be in the country and near my parents! Lots to do with medical supplies and such, but nothing compared to vent days, so no complaints.

PT came again and agrees that he is taking off. We are not going to bother to get another PT when we move, but just do an evaluation in 3 mths. No OT either, but of course we will need to find speech out there.

We believe SOY IS the issue. Has done soooo much better with rice, but has lacked all the extra calories/protein that was in the bright beg. formula so we are starting a new blended diet with flax, molasses, olive oil, wheat germ, and a few more yum yums. Good thing he cant taste it, huh? ;o) The base will be hemp milk...

He was in the 3rd % in weight and 31st in height at the nutritionists yesterday. Skinny thing! Hoping this new diet will fatten him up!

Will be busy and packing for the next few weeks, so until then...

MOST IMPORTANTLY...
My heart is heavy for the Agnew family, a fellow blogger that I have never met, but have been reading about their precious baby girl, Maggie. I started following her blog back when Camden was trached. She is extremely sick and they found out she has a mitochondrial disease a while back. Please keep her in your prayers....

Also all the families hurting from lost loved ones from 9-11....

Few Camden update =)

2010-08-24T20:32:00.004-04:00

First of all, the good news with physical therapy. Camden's PT said that although he is behind physically she feels like she is going to cut back her visit once a month! He is progressing so fast. If after a few months he doesnt seem to be making progress she will start coming more but he seems to be taking off. His walk is a bit Frankensteinish, but that is from laying so long. His muscles in his legs have to stretch in areas, shorten in others, but the PT said that is totally normal (although I do love his walk =p) He is hardly crawling at all anymore, I am still beyond excited over his walking. Praise God my baby is walking...

I am still trying to figure out the cause of the retching. He has been off the soy formula for about a week now and the retching has left....until this morning. ugh! I decided to take out soy to see if he had developed an allergy to it since he has those tendencies, being allergic to milk. So after a week of doing great, this morning he retched. I am still thinking soy is a problem, although being allergic to soy and milk is going to stink. I am going to have more blood work done to rule it out. I think the retching this morning was just normal Camden retching. I dont know! If the results come back ok, we'll pretty much know it is "just him" =(

He is signing a lot and still not saying anymore words. We now have speech therapy coming to the house once a week, and still continue to have the OT every Tues. She has been working with him on food, so he has despised her the last few visits. He did great today, licking chips until a piece broke off in his mouth and he starting gagging. He recovered well, then eventually threw the chip very rudely right after she left. Today he decided to lick my gum and loved it. ( I know, gross, but when your kid doesnt eat you dont care) So I need spearmint flavors, salty, chip textured foods that don't crumble. Anyone know where I can get these, let me know.... =)

This past weekend we raised a little awareness for CDH. We were trying to win the APX contest that was offering 100,000 for first place with the foundations that received the most votes off of facebook. We went out in front of a mall and gave people ribbons, and made them promise to go home and vote for us. =) Not sure who really did it, but at least they got to learn what CDH was. I am pleased to say CHERUBS won 2nd place, the 30,000 reward!

Officially WALKING!!

2010-08-14T22:47:00.003-04:00

I waited 24 hrs to make sure...but it is official. He has decided to walk. He does it a lot, like a little turtle. So precious! I still cant get over it, and kept making him do it today. =0)
Gagging and retching is still bad. Actually seems to be having more bad days than good. With all the research I have been doing online, I am realizing that is seems to be caused from the nissen wrap he had. Basically there is nothing that can be done, and with time hopefully things will change. I am finding more and more similar stories about other kids with nissens having the same symptoms. And it doesnt have to happening right after surgery, it can happen a long time later.
In the meantime we did meet the new GI doc. He is ruling out parasites (dont u love getting poo samples?) and I have Camden back on a probiotic, but I know that isnt the problem. I could be wrong....but I just think this is (unfortunately) how Camden's body is working right now.

BUT.....he is walking!!!!!!

Another test...

2010-08-02T23:28:00.002-04:00

Going in for another upper GI this Thurs, this time a bowl follow through, somthin or another to see more.
Then we will start to see a GI Dr, which I knew was coming, I was just was trying to go for "less" appointments, but it only lasted so long. ;o)
His upper GI from last week shows no problems, nissen intact. Thank God for that, but still not sure what causes all the retching.
Until then...

walker and GI issues...

2010-07-30T18:29:00.002-04:00

Camden still hasnt walked since July 10ish. I just knew he'd take off, but he hasn't by anymeans. His PT brought him in a walker the other day to see if that will encourage him. He is getting good at it, but doesn't do it continuously, just when he feels like it or wants attention. =o) He did better than we thought though. All his therapists think he is extremely stubborn....

For about a month now he has went back to retching and gagging. A LOT. Mostly during feeds, but also strangely when he is trying to poop! :s When he does this it usually means reherniation of the diaphragm, or like last time it was when we found out he was extremely allergic to milk. Or his nissen unraveling? dunno.... SO, Monday I took him in for an Xray. Diaphragm looks ok. Great! =o) So, we went for an upper GI the other day and havent had a call back on those results yet. If that looks ok too, I dont know what to think. We switched to soy a few mths ago, so he could have developed an allergy to that, but that would really STINK. If upper GI looks ok, I'll take all soy out and try that. I can't stand to watch him retch and dry heave everyday. The little trooper just gets through it then goes back to his play. In the mean time we have slowed his feeds, and have been venting him a lot more. Lots of steps back in the eating area, and with all the icky feeling, he hardly wanting to lick now. =o(
Ready to get to the bottom of it and make him feel better. I hate not knowing....and if things look "ok", and it isnt soy ( which I highly doubt anyway) and this is just what his body is doing right now, I dont know what to do. It is hard to even keep an 18 mth old hooked to a feeding pump for any amount of time, so I cant imagine longer. I am just babbling thoughts tonight as I post... ;)
Other than that.....he is doing great! =o)

Glad I got the walking on video...

2010-07-18T15:30:00.003-04:00

...because that is the one and only time he did it! He has had PT and wouldn't hardly stand. Im glad I had the video to show OT and PT or they wouldve never believed me. ;o) He will not do it for us either. I even tried to take him back to Nichole's carpet...nope. He is a stink pot. He refuses, falls to the ground, laughs and take off doing his chimp crawl.
His PT did introduce him to a tricycle this week. He was checking that thing out and very concerned that it would fall over. He did really well. Hilarious when she wrapped his feet to the pedals. But he was ok with it after a few minutes. As you can see above, we are still using the protective and it has prevented more head injuries! We love that thing...

Still not saying anything but making more sounds, and almost says "uh oh" sounds more like "uh uh"
We started introducing dusting foods, like ground up pretzels. He aint having that either. He still is licking, but not wanting it IN his mouth and this month it has been a bit worse. He likes to lick pretzels but hates it "dusty". He had a wet cough that started around the 4th, and it is lingering. We were quite happy there was no O2 needed, praise the Lord, but when he coughs it makes the reflux want to come up more, which causes him to retch. Having the nissin surgery which doesnt allow puke to come up makes it worse. ( yet he had to have it to keep food down) Another vicious cycle, and a little set back in the eating department. So that is why I believe he is refusing orally even more. But we are ok with it. We are not in any hurry. Thank God for gtubes. ;o)

We are trying to get on a cloth diaper kick. We have a few so far and they are so cute. I have to learn a few more things about it before we are all cloth. Daddy doesnt seem very fond of it....but I am thinking he'll adapt. =0p

really big "steps" tonight....

2010-07-11T00:05:00.002-04:00

....Decided he was going to learn to walk before standing! We were at the Saphore's house tonight and he always loves the soft carpet and feels more confident on it. We worked with him for a few minutes, then he got the confidence and went for it! I am so proud!!

ENT visit and the fourth

2010-07-05T22:06:00.003-04:00

standing for a few seconds =)

Oldest brother, and daddy...

Camden with his Nana and Nanny (great grandma)

Last year Camden was on a vent and had only been home from the NICU for 2 mths. He obviously did not go out for the 4th of July. This year he did. He danced with his flag and watched fireworks with out freaking out. He is so funny and he loved his "first" Independence Day celebration. Thank you, Lord for our freedom!
He even had a little touch of a tummy bug, but that didn't seem to get him down too much. He missed a few feeds and I am sure lost a little weight, so we will be starting the new diet tomorrow. I didn't want to add the extra oil when his tummy wasnt all right.

We saw the ENT, Dr M the other day and he says Camden is looking great and we do not have to see him for another 3 months. That is SOOO WEIRD. Camden doesn't have to go to the ENT for another THREE months!? We go see the pulm tomorrow and we will see when we have to go back for the next follow up. I am thinking it is really calming down with all the appointments and it would be nice if we just had to go to the hospital once every month or so...we shall see.

Busy June

2010-06-29T17:59:00.004-04:00

Camden in his frog bathing suit..

Camden has been doing lots of swimming this June and thinks he can actually swim. He is now trying to jump out of my arms. Swimming in dad or mom's arms isn't good enough. If he'd never had lung/airway issues, I'd so let him go so he would know that he couldn't swim, but ofcourse that isn't happening. So now when we go in the pool he fights me the whole time to get out of my arms. No fear!

Still no oxygen needed. I am believing we are done with that!

No food by mouth, but still licking EVERYTHING. He loves licking pretzel rods and prefers salty, but will lick a cookie too. He is taking sips of our drinks here and there, but as soon as you hand him a sippy cup or spoon he pitches a fit. During dinner he is in his high chair, we sprinkle some food on his tray, give him a real big fork, (wants the real deal) and then he forks the food. No eating it, just forking. =) Still, this is all huge improvements for Camden.

It has been 3 weeks since we increased his feeds, and I believe he has started to slowly gain again. I havent weighed him in 2 weeks, but I am thinking he is now a little over 22 pounds. He is still on the same baby food blenderized diet.

Still no words besides" momma", but is making different noises. His OT told me that she has noticed more sounds since last week. He is yelling at us too. He is also scribbling on my walls. I never thought he'd be doing that this soon and I am so proud. =0)

He is signing more too. Learns it once and it sticks. He wants to know the signs for everything. He looks so adorable when he signs "day." And every animal is still "dog" except cats.

Not walking, but close. We have a new PT (love her) and she is going to give him another week or two to see about a walker. She says he'll probably just need it a few weeks to boost his confidence, and then she thinks he'll take off. As fearless he is, he isnt in the walking department, but it wont be long.

We found a new organization in the Philippines that helps trach babies lacking supplies to donate all our extras to. I am so thrilled it will be needed and used. the other extras that weren't in the packaging and couldnt be shared are also being put to good use. This is my Peanut's dog pictured above, Fred, who apparently had to have an emergency trach put in last night. At least his breathing is being monitored by the lego apnea monitor.

Today, I am thanking God for Camden's growth and for his health. I was able to talk with another mom today whose baby was trached yesterday. =( Thinking back and explaining things to her brought me back to those days and I am amazed at how far Camden has come. I thought about how far he will be this time next year, and he gave that mom hope for how much her baby will progress in a year. She really helped her seeing him up and moving and trach free!

The beach, sipping, and other updates...

2010-06-15T22:12:00.003-04:00

Camden has been doing a lot this June...
He will be 18 months on the 22nd!

First praise is that since the day his trach was removed, he has NOT needed any oxygen!

He has been to the beach twice since trach removal, and loves it. Has no fear of the water. Also signs "water" when he sees pools and gets excited to take a swim with daddy.

We are still cruising, but working on getting the courage to walk. I am thinking it is just a few weeks away and he will be walking.

No new words, still just says "momma". When you bug him to say anything else he says "momma". He does "hum" "uh oh"..

He is signing approximately 15 -20 words. He also signs "dog" for every animal. The gorilla at the zoo was a dog, and so were the birds at the beach. Oh, and while reading Noah's ark, all those animals were dogs too.

He is still hanging at 21 pounds which has put him in down in the 3rd percentile for weight (30th in height) so we have increased his feeds. He is now getting 4 syringe feeds of 195 mls each ( still blenderized diet of fruits, veggies, and meats) and is tolerating them wonderfully!! The milk free diet was definitely the key!! He is still getting a night feed on the feeding pump, but we have cut back on that. My goal is to cut that out completely and add that to the day feeds as he continues to tolerate more food at once.
As you know he is now licking, and now wants to try everything we eat, depending on his mood. If he is in a bad mood, food makes him even more angry, but most of the time he wants to lick.
He will actually open his mouth and almost bite my finger off for spaghetti sauce.
He will now sip sweet tea out of a cup. Yea!!! Still no official calories by mouth but I am thanking the Lord for licks, sips, and tastes.

Has 6 teeth all the way in and at the moment he has cherry red gums and is cutting like 6 more, poor thing.

Still wearing his "ThudGuard" toddler helmet with the over paranoid mom. I am thinking after he has been walking for a month I may let it go? = o)

Still getting occupational therapy once a week, pulmonolgist around every 6 weeks, nutritionist around every 6 weeks, surgeon every few mths. We have a follow up with ENT July 1st, then not sure when we'll have to go back. We do not have to see the cardiologist for 1 whole year. Our next step in to look into an intense feeding clinic.

This has been an exciting month for the Roells! =)

It really happened.....

2010-06-04T19:37:00.005-04:00

Camden is officially a LICKER

2010-05-27T20:00:00.006-04:00

I haven't wanted to blog about Camden's eating because every time I do, he stops making progress. ;o) But this time I believe it is official. He is now a licker and is actually opening his mouth and then closing it on the cracker or cookie with a lick. He has even taken a small bite out of a pretzel. He gagged and made a lemon face, but that is a weird feeling for him so it is to be expected. He used to only lick for 'praise' but this week I have caught him a few times licking when he doesn't know he is being watched. = p He still goes through his different moods with it, of course. When daddy got home last night I asked Camden to show daddy how he eats and he threw the cookie across the room and wanted no part of it. Still, he has made HUGE improvements in the last few weeks and we are extremely proud parents of a "licker."

We checked out a Baby Signing Time video from the library yesterday and we are hooked. There is something about Rachel's smile and I am finding myself watching way too much of it with Camden. He likes them too, so I guess we need to start investing in them. He is picking up fast and doing great with his signing. Barney still remains to be his favorite.

We are missing his Thudguard helmet. I feel so lost without it, and I have no idea where we put it. It is in this house somewhere.

Above is a picture of all my children...Camden's siblings do exist! Not sure what Camden was doing, but the others looked kinda cute. = o)
Also, one of his new ugly scrunch faces that he gives people. It is pretty bad, but really funny.
He also decide to really suck his thumb on the day we went to the park and had a picture day. He never sucks his thumb like this, but makes me look like a big liar with these pics. He is actually sucking his thumb more often since that day. I feels weird saying that and being all happy about it. I was always against thumb sucking....now I am so happy my kid with oral aversion wants his thumb in his mouth.

You can see his trach is missing his purple PMV in most pics. He yanks it and throws it or licks it. Not hearing him as much these days. After next Wednesday he will have no choice but to have a voice 24/7.

Putting things in perspective.....

2010-05-23T00:03:00.009-04:00

Last May>>>

This May......
Tonight, I am not able to look at this picture without crying. This picture says it all. He looks so free here. I put him in this swing yesterday and his excitement brought tears to my eyes. He would get the hard giggles as I pulled him back and counted to "three" and then waited on me to let go and yell, "weeeee" He would sign "more" when I stopped... over, and over, and over again. I never knew just how far he would come in a year, no one did, but yesterday he was swinging, breathing on his own, hearing my voice, holding on to the swing so tightly with his little hands, and laughing out loud.

Thankful to Him for guiding us from that May to this May.

* why do the baby swings have to look so gross at every park?? Those that know me KNOW just how difficult it was to put Camden in that thing. I sani wiped it over and over again as it remained black, realized it needed a magic eraser, and just had to 'let it go'. I had to remind myself that whatever black stain was on the swing was now (hopefully) germ free. Camden could have cared less. He will eventually have to learn to live with me and learn germ rules.

Ordering Medical supplies

2010-05-14T14:52:00.002-04:00

I placed my monthly order today and it only consisted of syringes, gtube extensions, o2 tubing, feeding bags, and his pediatric formula. No trachs, trach ties, J bunn tubing, masks, trach guards, pmvs, soft sponges, t-vents etc. I feel like another huge weight has been lifted off of us. One more tube will be removed out of my baby.

Unexpected PICU stays YUCK!

2010-05-13T11:02:00.002-04:00

Camden is ok. But long story short his brothers got careless in the house with Camden in their care ( I wasnt a happy mom) and Camden did a crash bang off the couch onto tile. Fractured his skull on the side of his head. I was so upset. I atually didnt bring him in right away because there wasnt a knot and they had told me hit fell more on his back. Nope. The next day he had a huge fluid filled pocket on his head so to the ER we went. We were there for 5 hrs, then they admitted him to PICU over night. They said it was really tiny fracture, but with his history they wanted to watch him. I think the worst part was when they had a social worker come talk with me. I understand they have to do this, but it KILLED me. I cried the whole way home. I was paranoid that someone might actually think that of me and then I was sad for the kids who are actually in there because their parents really hit them in the head. =( The dr said she cant begin to tell me al lthe abuse cases. How sick and heartbreaking.

So that is what we've dealt with this week. He looks great and seems be back to normal. Other than being clingy he didnt have other symptoms. ( o fcourse he couldnt tell me that he had a headache which Im SURE he did!)

Other than more gtubes balloons popping on us, there is nothing else to report today. =) We continue to do the count down to trach decannulation day!!

His First Word @ 15 mths old

2010-05-01T21:51:00.004-04:00

was Momma. =) The other day on the way home from a two hour trip, Micah repeated it 5,000 time to him. (that is what it felt like to me) Right as we were about to turn into our neighborhood he said it and I was all over the road laughing and crying at the same time. IT SOUNDS SO WEIRD to hear a word come out!!! Even with the PMV on he just usually hums and sometimes says, "ah, ah, ah" so a real word is just too neat. =) He is very sick of all of us asking him to say it, so rarely will he say it on demand unless he is in the mood for praise. He said a word!!!!

I have been letting him sleep with the therma vent on. I guess technically you arent supposed to, but with him doing so well I wanted to see how far he would go without needing oxygen. We spent the night at my parents the other night and he didnt need any. Since we've been home he has needed it around 3am so I have to use the J Bunn. That thing turns our room into a sauna so I try to keep him off it as long as possible. I am going to have to get some nasal cannula and try to get him used to them on his nose. When that trach goes, I know he is going to still need o2 at times. yikes, that should be fun getting those things up his nose! ;s He has been doing great in our room. Im up much more but I kind of think of it like I am up with a newborn baby. Every night is different with the monitors and him coughing etc. He has actually went the last three nights without suctioning so he is slowly getting over that cough he had.

Trach decannulation date: JUNE 2nd

ok, so that answers that ? of the day...

2010-04-23T22:12:00.003-04:00

Dr M did come in today and he taped Camden's PMV off which didnt phase him. (PMV is his one way speaking valve, so taped off he was breathing all on his own) After scoping him last month and with Camden doing so well he said the trach is ready to GO. Yep, the scheduler is trying to find a date to go to the OR and PICU so Dr M can scope him, check an ear tube that was covered with wax, ;p and then remove the trach. REMOVE THE TRACH. YAH! I knew he was ready, but it still doesn't seem real to me! So many emotions. We will stay one night in the PICU then when all goes well, head home without having to worry about a suction machine and emergency bag anymore. We do not have a date yet. With being so backed up it probably wont be until June, but we are heading in that direction so I am grateful. i will know the date at the end of next week. I told Jesus I am not asking for anything today.....just thanking & thanking & thanking.

So, I put him on a soy formula and he was a different baby this morning....YAH! I talked with his nutritionist earlier and she gave me a soy formula to check out on line this weekend. If I like it we can go with that and then find a new milk free recipe for the blenderized diet. For now he is back on formula, just soy free. =) I can't wait for him to feel better and it was so nice to see him not pukey this morning. I could kick myself for not realizing it was milk and this bad!

Back to the ear tubes and like I already said....they did see one and the other was buried behind goo so he'll look when Camden goes under before trach is removed. Not sure why he still pokes his ears, but someone told me today it could be that he hears more clearly...dunno? At least he isnt crying about it so maybe it is more of a weird feeling.

Milk allergy

2010-04-22T22:52:00.002-04:00

Yep. =( I had a blood panel done last week for allergies because of the symptoms he had over pediasure and a few times during breast milk days. He is allergic to milk. I will say I knew he had an allergy, but had no idea it was that. Sooo...all day I have been thinking about it, and there are so many symptoms that milk may be causing that I could be blaming other things for. He is lethargic and puky every morning. Of course he has severe reflux, but has milk made it more severe? He is on a continuous milk based formula through the night, so it could be! As upset i was to hear that he even has an allergy, I cant wait to get it OUT of his system to see a change in him. Tonight he is on a soy formula and I will alter the blenderized diet until I talk with the nutritionist again.

Also, I called the nursing company and stopped nursing all together. I am not finishing the month and Camden IS in with us. A little cough has also settled in his chest, but it hasnt been too bad so daddy and I have taken shifts to sleep on the side of the bed closest to him to suction when needed. ( he normally doesnt need too much suctioning at night, sometimes never) Poor thing. He is fine during the day, just coughing every now and then, and then at night he needs a bit more O2 and coughs much more, but other than that it hasn't worn him out too bad. Now I know why he was so clingy and whiny last week.

Tomorrow we go see the ENT for ear plug follow up. He has been poking at his ears, so Im wondering if they fell out, Not trying to be debby downer, but his ears are still bothering him. I am a bit sad that we wont be seeing his DR and just the nurse practitioner because I was really wanting to see if we could start weaning him off this trach. All in time & just trying to be patient. He is just soo close, and doing so well which I am so grateful for. This time last year we were preparing to leave the NICU after a 3.5 mth stay. He has come so far this past year...

Camden's new move and new diet...

2010-04-18T18:26:00.002-04:00

After much thought and prayer, Marcus and I have decided to move Camden in the room with us. I called the nursing company last Friday and let them know and told them they could finish up with this month, but that I am ready to have my baby in with me. ( Plus a lot of nursing issues, but I'll spare u the details =p) I am beyond excited to have my baby in my room. He is doing well, and hasn't had any serious scares. I know that my sleep wont be as thorough, but it is time. I am beginning to be more stressed about new nurses and sleeping nurses and that hasnt been helping me sleep. I will have the monitors taped to my head. Not really, but they will be on a shelf right next to my bed. Room measurements have been done and there are spaces ready for the crib, O2 tanks, suction, apnea, and pulse ox machines, j bunn, and feeding pole. =p I hope Camden is just as happy and does well with the new move.

Today was Camden's first blenderized diet. I was super excited. This first batch was turkey, applesauce, squash, peas, olive oil, milk, rice cereal, and a bit of corn syrup and boy did it stink! (Good thing it is given by gtube lol) I am not sure how he is tolerating it. He was off and on retching today. I am not sure if I gave it to him too fast? I did his dinner over 30 minutes and he didn't do well. Tomorrow I will slow it back to over an hour and I am thinking he'll do fine, then we will work at slowly getting faster. Day by day..... =) And thankful to the Lord for this day....

A few updates in the Camden world....

2010-04-10T22:46:00.002-04:00

Camden has been staying healthy and we are super thankful for that. Crawling around a lot and slowly cruising along furniture. Funny thing he still doesnt roll....weird. He is like a turtle on its back... We are still doing OT here at the house once a week and his OT is very happy with his progress.

Still has just the six teeth...

Still no words, ( besides the occasional mamamama) just hums and "ahhs" and the peewee herman(ew) laugh that is hysterical. It is so fake and so funny!

Doing great with the o2, only at night but now seems to be needing it only a few times a week, with the j bunn.

Forgot to mention we are trying a new feeding tube...the Mini One. Been a few weeks, and no leaks with it. Much more secure, until today when my 13 yr old ripped it out. GRR! He doesnt go online, so I can vent here. ;) He felt bad, but the balloon didnt burst and I put it back in. I was a bit emotional ( ok, I was crying) because it was hurting Camden and he was bleeding. So over the tube feeding, but it is what it is. He will not put anything in his mouth. Im making him play in food more this week. We did stage 1 sweet potatoes on his highchair with a spoon and he smacked it and touched it. That is a big step. Another interesting thing is that when WE eat, he licks and smacks his lips. It looks as if he is begging for food! Of course you offer him some, and (besides the occasionally surprising lick) he shakes his head no or growls at you to leave him alone.
I am also starting him on a blenderized diet. I am not wanting to give him a toddler formula 24/7. I want him to have real food. Fruits and veggies. So, I got with my nutritionist and we are starting with a simple recipe. I will do this during the day feeds, then start him on pediasmart feed at night to make up for needed calories. Cant wait to try it!
Still have to get him into the allergists to see if we can find out why the breakout with pediasure.

We are down to an hour for one feed now. ( sounds like a long time to some, but that is great for us) I am hoping this new diet doesnt cause a huge set back because I know I need to start it out a bit slower to see how he tolerates it.

he is signing:
yes
please
all done
milk
no ( his made up "no")
dad
mom
and today he did cat for the first time =) he loves the cats out front and want to grab them, but they are way mean! :s
I have been slacking on teaching new signs and need to get on the ball...

weighing 22 pounds now at almost 15 mths.

CDH Awareness Day

2010-03-31T13:34:00.002-04:00

March 31st is CDH Awareness Day. Camden is sportin' his new shirt we ordered for him and he has the major giggles today. =)
This video below is from the CDH Cherubs website for all cdh survivors and babies that have already went to be with Jesus. On this video, there are 700 pictures of babies, children, even some adults that have had their lives changed due to a diaphragmatic hernia. Camden's pic is even towards the end. =) The founder of the cherubs website is a precious lady, Mrs Dawn Torrence Williamson who lost her angel to CDH. She has dedicated much of her life to continue to help others that struggle with the affects of CDH or the loss of a CDH child. The beginning of the video shares some facts about CDH... video

Louder and faster! =)

2010-03-30T08:52:00.003-04:00

Camden is getting around everywhere. His crawl is quite funny, but it works and it is getting faster and faster. He loves to pull up on the couch and cruise.

Last night I had to go out for a bit and my son called me to tell me Camden said "momma". I have been trying to get him to say it FOREVER. Of course when I got home he was in silent mode again. He is off and on making sounds, depending on his mood, although he is wearing the PMV (talking valve) all day unless he is sleeping. He is opening his mouth more which is huge and started fake "ha ha" laughing the other night. I LOVE to hear him.....love it. Never gets old. I can't wait for him to wake up so I can put his PMV on. =) And actually hearing his laugh is amazing. So, obviously with him tolerating the PMV ( remember he can breathe in through it, but he has to exhale out of his mouth) he is doing well in the breathing department. Hasnt neede o2 during the day but he does at night because of the Jon Bunn ( mask the moisturizes his trach) has always caused him to require a little oxygen.

This week he has taken 3 licks of milkshake and 5 licks of gravy so far. They were teeny tiny samples but he licked it and went back for more....then got mad and shaked his head NO. =) It is like he is so curious, gets the courage to taste, then sometimes gets nervous, or the taste gets overwhelming and he makes a sour face. Cant even imagine what he'd do over a lemon.....

Some of the pictures above are from his first zoo trip. He loved it!!

Thanking Jesus...

2010-03-27T00:59:00.002-04:00

“My salvation and my honor depend on God ; he is my mighty rock, my refuge." Psalm 62:7

I was looking back at this time last year and Camden was recovering from his trach surgery. It is almost hard to believe he has been trached for a year and almost home for a year. I remember praying for time to go by quickly. It has. It is 1am and I am hanging out in Camden's room waiting on daddy's 3am shift. =)

I heard of another CDH baby passing away today and my heart aches for them. I was following the blog while the mom was pregnant and was sad to hear that the baby didn't make it. Please say a prayer for A.J.'s family tonight.....

Good day

2010-03-22T19:02:00.002-04:00

Surgery went well, Camden did great. They didn't wheel him away in a crib this time, so the hardest part was giving him to a nurse to take back to the OR. He was losing it, looking at me like, "Come back!" =( He freaks with nurses and Drs. Even getting his vitals is a nightmare....But, all is good and his airways have improved, thankyou, Lord. So HOPEFULLY we can work on getting that trach out. Go back to see the ENT in a month....

Ear tubes tomorrow

2010-03-21T23:24:00.001-04:00

we have to be there at 615, surgery at 7am. It should be quick and I am not expecting to stay too long if all goes well. Then hopefully Camden will be free of ear pain. =)

Shots and O2

2010-03-13T23:01:00.003-05:00

Camden has been on O2 at nights for a while, but I couldnt get him off tonight. I am not worried...I'm realizing this is just Camden. He doesnt seem sick, sounds clear, and is in good spirits, just needs oxygen. ;)
Dr. C came and gave him 2 shots. He was ticked but got over it very fast. poor baby. =(
He is still cruising, but was a bit frustrated trying to get around attached to o2 tubing. Made me think back to ventilator days and how thankful I am that he doesnt need that. That would be super hard to crawl around with. Daddy and I will take shifts tonight. We seem to have a few more nights without a nurse this month. I have first shift, and I am watching the little die hard now. He likes to be silly and tease me through the crib bars, rolls all around off the boppy and makes me have to keep scooting him up. ( we use the boppy up-side-down to try to keep him up on the elevated crib) He also just ruined another pulse ox sensor by yanking on it, and now he is kicking his crib bars. Stinker!

Rocking on all fours one morning...then later that day Im....

2010-03-09T15:49:00.005-05:00

CRAWLING!!!! =) I love getting into things! My family is WAY excited today, and my OT is going to be shocked when she comes Thursday. =)

Just more updates =)

2010-03-04T20:41:00.004-05:00

Just thought I'd share some updates.
Camden is now a little over 13 mths.

Camden has been wearing his PMV for the past 4 or 5 days and it has been great to hear some sounds today. We aren't positive if he said it, but we all heard him say what sounded as a raspy, "HI". =) He doesn't like to open that mouth, and actually has to be in the mood to want to impress to do it. This video shows what he does and shows how he gags when he does open his mouth sometimes. I am thinking the trach tickles his throat when he opens his mouth. It is doing something to make him gag or cough.

Physically he is doing pretty good. The other day he pulled himself up in the playpen and is now a pro at it. No crawling, but I am thinking that isnt going to happen. That is what the PT is thinking too. He did great in his PT session today and opened his mouth lots for miss R. His left leg seems to still be very weak,(which is not helping him crawl as he flops into frog position) and he actually using his arms and right leg to pull himself into standing position. He will also slowly get to where he needs to be but scooting on his hinder, but he isn't all over the place yet.

Eating is a big NO. Nothing, not even a bottle. He cant tell me what hurts either, so that is hard too. B/T his throat, ears, and stomach you never know if something is hurting him making him. Yesterday I tried a speck of baby food on a spoon and as soon as it hit his mouth he lost it and tried to throw up three times in a row. (remember he cant throw up due to a surgery he had for reflux) I have never seen him gag that hard. I really feel so discouraged with the eating situation and am trying to accept that it is going to be a long road.

There you go! Other than the Camden "norm" we are enjoying him so. He is in love with his siblings and actually gets a bit depressed if they are all off with daddy. I have to take him in each room and show them that they are gone. My kids are also so so wonderful with him. They now all suction if I am in need. (which isn't a lot because Im a bit controlling ;p) But they can do it. If I am driving, they have to and that is a blessing to have them being my little nurses in the back seat. They still fight over him too....drives me nuts at times, but at the same time I am so grateful that Camden has wonderful, caring, siblings. He will be well taken care of! =)

video wont load...will try again later!

short update

2010-02-26T23:43:00.006-05:00

I called for the extra o2 tank to be delivered here since o2 has been his new normal at night. Well that is what it took. He hasnt needed o2 anymore. Tonight will be the third night, and I am thinking if he does need it, it will be very little. Camden thinks it is funny for mommy to have to squeeze more medical equipment in his room. Stinker!

Ear tube surg will be March 22nd....

He is tolerating his PMV now. Another sign that he is getting back to himself! =)

Camden and his big bro Pnut who has moved in with him got a room makeover. They have boyish blue walls now and I think Camden likes it. Ok, I actually dont think he even noticed, but he did notice the bright new quilt on Pnut's bed.

More tubes

2010-02-19T23:37:00.004-05:00

ENT app today. Camden is now getting tubes put in his ears. Dr M will also take a good look at his airways while in there so I cant wait to see how they have developed. At first I was thinking how this really stinks, but now I am thinking taking some pain from my boy wont be a bad thing. I seriously want to cry when I see this kid in discomfort and he just deals with it, smiles and moves on. My boy is FULL OF JOY. So tubes in his ears may make him a happier baby, if that is possible, cuz he is already pretty happy. =)
No surgery date yet. (The cool thing is that this doesn't even seem like a real surgery to me compared to his other stuff.)

Still on o2 at night, but I can see him doing a bit better. He is actually just on a tiny amount tonight. (I am his nurse tonight, the nurse called in. He likes me more anyways. ;p)

We are really missing his voice! Still not tolerating the PMValve due to this season of sickness. We tried in on tonight, and although he tolerated it a bit better, he didnt make much noise. He just keeps that mouth shut tight unless you really REALLY make him laugh hard. And even then it is just a few seconds. I cant wait until he gets better and can wear it more and learn to talk one day. I cant wait to hear his first word. One day!

Sick, again

2010-02-11T16:51:00.002-05:00

Yep. So we are gonna be hanging around the house even more through this winter sick season. Seems we are coming in contact with sick people and I just cant chance it anymore. We don't even go to stores and have only been to church a few times, but I guess that is enough. He is picking everything up. Less kids/people we are around the better, for now. I am sad about this, but getting sick three times in 2 months isn't worth it. So, I called pulm. today and he is on albuterol every 4 hrs and another antibiotic. He is doing ok and thankfully only needing a tiny bit of o2 at night.

So, I am finding that Camden has an intolerance to corn. ( you are thinking, " You have to be kidding?" Yea, me too....) He isnt handling the pediasure and broke out in hives and vomited through his nissin. He also broke out with burts bees shampoo and the common ingredient in both pediasure and BB shampoo is corn. So I am getting him into the allergist ( why not, we are at nemours all the time anyways ;p) asap to rule it out so I can search for a corn free toddler formula. I think I have one in mind and it is organic and cheaper, so that is even better. (thanks, Nichole for researching)
So for now we are back on baby formula and his skin is clear and he is happier.

Today he had another RSV shot. As usual, it broke my heart and this time he didnt forgive Dr C and cried every time she'd try to touch him.

Went to Cardiologist on Monday and he wasnt quite happy with things. His ventricle is still "thick" and he thought it would thin out by now. He said he needs to keep in mind that Camden had a really bad start and it may take longer. Not too much to tell, just will check it out again in 6 mths and see. He did say he didnt want the trach pulled until we saw him first. I am not worrying about this situation. I just think Camden's body and heart and body went through so much stress and just needs time.

We are trying to add more signing in since this will be his only way to communicate as of now, especially with being sick and not being able to wear his PMV to help him. He knows momma, daddy, please, milk, no, yes, all done. He has actually signed momma, please, and milk. Today he decide to be rebellious and shake his head NO when I asked him to sign please. (His new thing is shaking his head NO to everything.) Definitely need to get to work on more words. Daddy claims he has signed daddy, but I know he was just trying to poke his ears because they hurt him...

I had to order ANOTHER mic key button ( feeding tube) because his busted again. This time I babied it and was extra careful not to pull it out so now I know it is his crazy strong stomach acids popping the balloon inside. Problem was that Humana only pays for one a month and the last time we had to get one was 1/11. This happened 2 days ago so it has been taped to his belly. Call me cheap....LOL I refuse to pay 200 bucks for one when we pay humana an absurd amount a month. So today he has a fresh gtube in.... with a sticky belly. =)

Jenny Craig....

2010-02-01T19:13:00.003-05:00

The extra formula is working. He is now gaining too fast, up to over 20 pounds now. I cut back slightly to see if he just slows a bit on the gaining. Gaining is wonderful and a blessing, but a pound a week is over the top. I can't have a fat trach baby that can't move around. =) He is still on formula and now that he is a year we are going to be switching to pediasure soon. Nothing by mouth as of now....the bottle is his enemy again.

Camden picked up another "something" last week and spiked a fever on Saturday. He has been lethargic and clingy, but the fever did not come back today, thank God. I am hoping he fought it off and is done. He is now back on O2, which I expected. During the day off and on, and all night.

We saw pulmonology today and his chest xray looked better than his last. I shared my concerns with Dr H about his breathing and requiring O2 most of this month. She basically gave me her perspective and said they never thought Camden would be out of the hospital as soon as he was and if he did go home they thought he would be on the ventilator for a long time. I think she wanted to say, " Of course he is going to require O2 when he is sick! What do you expect with his lung situation?" ...but she didn't =) I know she was being kind, but it made me feel that she thought I was ungrateful. I am so not. I am so beyond thankful. He is a miracle. The mother in me just always wants better and better for him. This was Camden's first sicknesses and I didnt know what to expect. I knew it would hit him harder, but I just didnt know how hard. It is difficult to take steps backwards. Especially with him being off the vent and off oxygen since the summer. Now he is on O2 so much even when he isnt sick anymore. But this is Camden. He does things differently and he is doing great for what he has been through. =) Just hard to watch him in his little "down" times.

So he did go to the Wolfson " One to Grow On" Marathon. He was one of the 55 children that they sponsored to raise money for the Wolfson Children Hospital. It was rainy and nasty but a special time for us even though he was miserable. I wish he could have enjoyed it. I thought he was tired and anxious with all the noise and people, but that was when he was getting sick.

I thought I would share his achievements at one year old, but we are having an eval Friday with OT so I will share then. =)

He is tolerating his new trach just fine. I had put it in a few days before and he wouldnt quit coughing so I took it out until I talked with the dr. He said to keep trying with each trach change until he gets used to it, but when I tried again he was fine with it. He is now a 4.0 ped.

HAPPY BIRTHDAY MY SWEETS!

2010-01-22T17:29:00.004-05:00

Today was an emotional day for me. Getting my shipment of bigger trachs didn't help I'm sure. I was constantly welling up with tears of joy, so grateful for getting to see Camden for his first birthday. For months I truly thought I would never see this day with him. I also had a pit in my stomach off and on thinking back on this time last year. Oh how I am so glad to have that part of his life behind me. And I survived. The Lord brought me through it. Only with Him was I able to move forward. Really. What I have learned this year is indescribable. So, here we are today, one year later.
Happy Birthday, big boy. I so love you. You are a very special gift and I know there are big plans for you.

Nanny and Nana came to see you and brought you some gifts, along with your Aunt Lizzy many cousins!

Also your special Ms Nichole and her kiddos had some noisy gifts to bring you. I can't wait for Emma's next birthday. I am sure there are many noisy dolls out there that mommy can repay her with. ;)

He loved the cards. I knew this when he played with a Christmas card forever last month.
He touched his caked, then realized icing sticks on fingers, and did NOT like that. Of course there wasnt any tasting either.
Fully Rely On God....cake made by Nana =)

Cousin Hannah and Jack below. I love this picture of them.

My grandma and my mom with the birthday boy. =)

"It will happen..."

2010-01-20T18:42:00.003-05:00

I have told myself and Camden that phrase a lot this week. I am still working on the bottle and he is doing so good. 3 ounces in a thirty minute time frame is the record so far. At times it is a huge fight, but I think he really knows Im way hard headed and he seems to give in at times. AT TIMES. LOL He sometimes gives me this smirk that seems to be saying, " I'll fight ya to the end, momma...get it AWAY" He has thrown the bottle and hit the bottle too. But, I am way proud of him and I am seeing him drink! It will happen....he will one day no longer need his feeding tube.

He seems to be doing ok. Im a bit concerned that he doesnt seem to tolerate his PMV ( cap for his trach so he can make sound and breathe more through is mouth and nose) He also needed oxygen last night. Maybe he was just having a bad night. We'll see how he does tonight.

These days he is loving to play peek a boo and running into our ankles with the walker.

No appointments this week, yeah!

ENT appointment, and bottle time

2010-01-14T19:51:00.002-05:00

The very excited news is that Camden did awesome with his bottle last night. This was totally unexpected! First I tried a spoon with cereal and he completely freaked on me, slapped the spoon, and cried. I almost didnt even try the bottle after that! PLus, I just knew the hospital stay/being sick was going to be a major set back in the eating department. I decided to give him the bottle anyway and I actually saw the liquid slowly but surely, moving towards the nipple. He was drinking it!! 25 minutes later ( he was quite over sucking at this point) I checked the bottle and an ounce was gone! I had praised him while he was sucking, and he is huge on impressing and showing off right now. =) He never gagged once. With oral aversion, you never know, but I am hoping this is the beginning of something. It is still small compared to the big picture, but such a huge step.

ENT today: Camden is getting a larger trach. His airways are inflamed, to be expected, and Im sure being sick was a set back. He still has fluid in his ears and the dr said next time if the fluid is still there, he is getting tubes in his ears. =( Always something, Camden! My poor babe. He was a super grouch too. He is so over the poking. I was a bit bummed about the larger trach. I know he is growing and needing it, it just felt like we were going in the opposite direction. Like he is no longer going to be a "trach baby" but a "trach kid". I never wanted him to be a "trach kid" ;( I am just feeling it wont be leaving as soon as I thought but Camden needs to grow more and get stronger and Im thinking with surgeries the trach isnt the worst thing during this season of his life. It is weird.

Speaking of growing, he is 18.14. Surprisingly through his crazy fast breathing and fever he gained, so that is telling me that I am maybe adding too many calories. I am going to give it another week and see if I need to cut back. I may have already shared this in my last post....cant remember.

God bless!

I'm back... well almost =)

2010-01-12T19:46:00.005-05:00

Feeling so much better and his personality is starting to come back. Boy did I miss that! He is a funny little booger...
I am thinking today or tomorrow will be the last day/night of O2. His O2 sats are a bit higher today which is awesome. We'll see how he does through the night.

I am so over the feeding tube balloons busting! ( they have a balloon that is filled with a small amount of water once it enters the stomach which holds them in place) Camden's deflated on it's own, again, so Im guessing stomach acids are eating at it. Thankfully I caught it after a few minutes so the hole in his tummy was still nice and open for me to put it back in. But, since there wasnt a balloon to refill, I had to tape it on so that wasn't fun for him when I had to take all that tape off to replace it with the new one. Hubby had to go pick it up since we didnt have any back up. Hopefully this one will last longer. As much as they annoy me, Id better get over and be thankful he has a way to be fed.

He did his first real sign today! I was so excited....We were standing next to his feeding bag and he signed "milk". I have only been consistent with a few signs, and that is one of them. I was so proud. =) My smart boy!

He also (now this is really exciting) licked a cracker!! He has licked a graham cracker before( a few months ago,) but hasnt since. Last night he licked a wheat thin over, and over, and over. We made such a huge deal over it so he was trying to impress us. Then it got soggy and he threw it and wouldnt touch it again, but he did it. That is a really huge deal. He licked it and didn't gag.

While tickling him today and making him giggle, I noticed his top teeth have popped through. (I have to make him laugh to see inside his mouth. He keeps that mouth shut tight most of the time) Totally explains the drooling and gnawing of fingers. He is gonna look so cute with his teefy grin. ;p

I received a letter today from the company that deals with the insurance/home health agency saying that the agency appealed the denial of nursing and with the information they received about us they are going to continue to allow nursing. I don't know the details, but I am assuming this is for night nursing only since the last day for my day nurse will be the end of this month. That will be fine. I just need night nursing so I can function the next day. Hopefully I will still have 11p-7a. Now I have to keep them from falling asleep. Yep, i found one completely OUT the day after we came home from the hospital. =( His feeding pump had been going off and she never heard it. It actually woke me up and I was across the room with my door shut. Yep, I was livid. I had to pray for self control. I was even more upset because I spent an hour and a half with her the night before explaining my concerns for his breathing, the o2 situation, asking her to keep a close eye, etc. It was hard enough to have someone new come watch him and then when I found her sleeping I was sick. I hate that I have to have people come in, but I can't stay up 24-7. =( I know it will all work out but at times it really stinks.
I have a regular night nurse that is here most nights, but I will have to have more newbies come in to fill in the rest of the week. It can be difficult, but I look forward to the day where he doesnt have to be watched all through the night, no trach, no suctioning, no monitors, no feeding tube.....

Licking my cracker.....Oh Im getting lots of attention doing this! Maybe a few more times, but it is starting to feel kinda wet and gross. =P (and check out my new hair cut. It started with an IV in my head, I guess the nurses have never heard of detachol, or whatever, so they cut my hair and my mom had to even it out. One side is slightly balder....)

What?? I never get sick of all these cool cords I have lived with! (what will he do when all this stuff is gone? ...and boy am I glad I cut that crazy hair!)

Love this picture....he reminds me of a little pea in a pod and his face brings joy to my heart.

Glad to be home =)

2010-01-10T18:31:00.003-05:00

We spent Wednesday and Thursday night in the PICU. Still never found out what went/is still going on, but they put him on steroids and antibiotics (which are burning his poor little hind end). I brought him into the pulm dr on Wednesday because I had called earlier that day and felt like he needed to be seen after they were just going to give me some meds over the phone. He was lethargic and breathing like 88 breaths per minute. He is a rapid breather anyway, but this was too fast. The dr thought he should be admitted. He tested negative for RSV and the flu. Since we've been home he is still having rapid breathing (not as fast) and still requiring O2. He hasn't been on O2 in months and even after surgery weaned right off of it. Now, as soon as his oxygen mask falls off, he desats to 86-89 and stays there. We thought he was all better from the cold he had way before Christmas, so I dont know if it just turned into something? Just keeping the pulse ox machine on a bit more now.
I am trying not to get fearful about his little lungs and just hoping that it was from the cold he had and thinking it just kicked his butt. Of course that scares the death out of me thinking what RSV could do to him. Ahhh, flu/germy winter season!!! I cant wait for spring.....
I can only pray that he will continue to grow stronger and stronger so that next time he can fight it even better. He sure tried his best this time and I think he did an awesome job. My little fighter...

My favorite things to do:

2010-01-04T21:50:00.004-05:00

....pinching my mom's arm, tearing up the baseboards with my walker, fighting my mom during trach care, sitting up scooting on my but going in circles, round and round, and round, getting hyper over my siblings, ( they are so much fun and I cant wait to see them in the mornings!) blowing and giving kisses, pulling on trach ( I actually pulled it out once and threw it across my crib while my mom was changing it, Im getting fast! ;p) waving bye bye, yanking daddy's beard, and playing with my fisher price mailbox on my play mat! ( btw, my mom loves every bit of this except the trach part =p)

Why arent we gaining this week??? That is the question of the day. =( I just weighed him and he actually lost an ounce this week(now at 18.8) and we have been fortifying all the milk. Guess we'll have to add more. I cant believe how hard it is for him to gain and all the extra calories he has to burn. So, Im going to start adding another tsp to everything, because he is already getting enough liquid.

With the new year I have decided to get super aggressive with the bottle feeding and it is going better than I thought it would. At first I was debating on the bottle, but he tolerates a small nipple over a sippy cup nipple. If he eventually gets good with a bottle and gets over some of this aversion it may be an easy change to a sippy cup down the road. He isnt getting much down, maybe a few mls, but he isnt gagging and is sucking on and off. It is a huge chore and takes time and patience....but every time I just pray that will be the time were I can actually "see" the milk in the bottle slowly going down. He fights a bit, but he isn't crying and will actually play with it at times. I am making it extra thick with cereal so it isnt so runny, dripping straight back to his throat.

I am still pumping but with him turning a year old soon, I am thinking of stopping in the next month or so. I want him to get breast milk as long as possible. It is also a bit emotional for me. I have known he wasn't going to breast feed ( or even bottle feed ) for a long time with his awful oral aversion, but it is really "over" if that makes sense. I havent had my hopes up and I accepted it( as much as you can try to ) months ago, but as I pump less and as he approaches a year old I am sad yet ecstatic. Sad because I feel like I missed so much of the "normal" things with him, but overjoyed that he made it to a year and that I was able to experience Camden's "normal"!!!

My nursing situation is this for now: Every night from 11p-7a and then Wednesdays, Fridays, and Saturdays 8a-4p. I have told them to not send any new DAY nurses and have kept one of my original day nurses who we all love. She knows Camden's needs, Camden loves her, and I dont feel comfortable starting with new people at this point. He just hangs with us all day on nurseless days. The kids love it. That way when Norma does come in I can get a bit more accomplished and know he is being watched. Most importantly she loves Jesus =)
They BAD news is that medicaid is stinking right now. =s Camden has medicaid back up for whatever my private insurance wont pay for and they only paid for one month of nursing, so thankfully medicaid kicked in for the rest. Well, now they say that they are starting to cut my nursing hrs back to practically nothing in a few months.( they even said 2 hrs a day... really? Do they honestly think a nurse will come out for that short of time? ) Well, if he still has a trach that just cant happen, so I'll have to fight that. It just boils down to people working in an office not knowing what a trach is, clueless in the medical field, and people who have never had a special needs child. =( You need an eye on a trach baby. So, hopefully things will work out to where I will have at least 8 hours of night nursing so I can sleep. God will work it out....he always does.
So sorry to vent about this, but I haven't posted about the nursing situation in a while, so I thought Id give an update =)

We go see the ENT next week to get a trach update, and to the pulm. That is it so far, but I am thinking we will be due for a nutritionist visit too.

Weekly Camden update and Christmas time

2009-12-29T16:39:00.003-05:00

Christmas morning started out with Camden pooping through his cute Christmas PJs so he couldnt wear them. Doesnt that always seem to happen? So small in the scheme of things, but come on! ;)
He basically just sat at his Nana's feet ( my parents spent this year at our house) watching his siblings. Wanted no part in his gifts, and actually kicked them all away. Once they were opened he loved playing with them. During this season I cant begin to tell you how many times I have thanked the Lord that I had my baby here for his "first Christmas". That was one of the greatest JOYS of this year along with celebrating our Savior's birth and how he came to save us!

Did you know that having Camden NEVER gets boring? ;) The other night we had family over and we were having scrabble wars. Yes, major geeks and we were really getting into it so we were all passing Camden around in between hooking him to feeds, suctioning, playing our turn, breathing treatments, etc. Later that night I had him in his room and my husband brings me Camden's mic key button feeding tube, still inflated with water. Camden either stepped on it, his brother accidentally pulled it out, or he stepped on it, but the hole in his tummy for it was pretty much closed. I dont know when it had happened but it was somewhere in a 3 hr time frame. ( the last time it happened I watched it pop out and I slid it right back in) I got it back in after about 5 minutes of trying and it not budging until I used a thermometer to re open it. ( gosh I really hope his doctors arent reading this ) but it worked and I didnt have to go to icky ER. Camden did great during all this. We normally do not leave extensions attached to it, but we did this time. We just cant do that anymore with him being so active.

His pediatrician brought his RSV shot on Christmas day. I was so sad for him, but glad he didnt realize that I was mean to allow that to happen on that day. ;) She called and was on her way to the hospital and wanted to get it to him, and he needed it. So we did it. He did well and had no side effects.

He is a whopping 18.9 pounds as of today. I was surprised because while he was sick he lost a few ounces. He is still on oxygen during the night so Im not quite understanding that unless the common cold just kicks his butt like this. He does great during the day, but as soon as he goes to bed his o2 levels drop. He sometimes just hangs around 88. We are just giving albuterol here and there again and o2 as needed.

He is tearing up the hallways with his walker and it makes me laugh so hard. So interested in crawling, just still so nervous and not quite strong enough. He just pivots in sitting position and eventually gets to the toy he wants as long as it is somewhere in a 2 foot range.

Happy New Year 2010 to all!!

First sickness

2009-12-21T20:47:00.002-05:00

this stinks! ....but it had to happen one day, right?
Sick free for the first 11 mths of his life. I am extremely thankful.
He had fever off and on yesterday which broke on its own and he is very runny so we are suctioning A LOT. Not quite himself but being a trooper as usual. ;)
He has needed oxygen the last 2 nights also. I am hoping we can lower it tonight to .12. He hasnt needed it through out the day.
Gaining weight like a champ. Over 18 pounds now. Loves his walker too. It is taking him a while to get the full hang of it but it is pretty hysterical watching him. I'll have to make a video of that soon.
Not getting anywhere in the oral eating department and with being sick, I havent done much of anything with him in the last few days.
Looking forward to my baby celebrating his first Christmas! Thankyou, Jesus.....

Well......

2009-12-12T00:50:00.003-05:00

So I took Camden in for an xray today. Lately he hasnt been himself, but it is off and on. Not his normal happy/active self. He hasnt been sick, no fever, secretions normal....Been going on for maybe a little over a week and I kept wanting to call, so today I finally did. I just wanted to make sure he didn't have any lung/diaphragm issues going on. Everything looked ok, so Im not sure what it is. I felt kind of silly, (of course relieved though!) when I got the call that the xray didnt show anything. ( does that make sense? ) He has been wretching much more since his surgery, but that could be from the nissan wrap. I wish he could tell me how he feels. Poor little man =( He seemed more himself today, so we shall see.

A few updates =)
we have worked up to 112 mls an hour and he gets 180 mls, three x's daily and 560 mls continuous feeds through the night.

We are fortifying the breast milk and formula and he has reached 17.11 so finally gaining again!

Got oral aversion?

2009-12-10T13:54:00.002-05:00

thought Id share a little clip of our oral aversion world. This video is mild. ;) He sometimes goes into screaming fits and wears himself out. The OT came last week and she is wanting to help in the oral area. It did not turn out so well, but we must keep at it. ( as much as I want to just run away from it at times! ) He usually hates the highchair, associated it with food, so I am putting him in it more. Today I just dropped a spoonful of applesauce on it and he wasnt happy. I made him taste it ( you wouldve thought I gave him straight up lemons ) then dipped some toys in it. He basically "ignores" the toys. lol Wont touch them with food on them. After a about 5 minutes I cleaned it and put clean toys on it. Then he was a little booger, happy in his highchair again. I want so badly for him to eat one day, but it is hard to watch him get upset. I feel like Im torturing him! ;0s

It's official

2009-12-03T15:22:00.004-05:00

The medical supply company just called and asked to come pick up the ventilator. It is really that time. Camden is off "life support" all together. He was on this vent for the first 9 months of his life, and now it is really over. It has been almost a month since he has been totally off the vent, and he hasn't needed it again. I am so very, very thankful to God at this moment....

Right after he was off ECMO

After trach surgery

Tube free!!! ( well if you dont count a trach as a "tube" ;p)

Teefers and weight gaining

2009-11-29T22:17:00.002-05:00

First of all Camden was a gem for his first Thanksgiving. The night over at Papa and Nana's place went just fine. He is such a good babe!! Was overwhelmed with different people at times, but once again did much better than I expected. :) For a minute there we thought he was interested in my plate during Thanksgiving dinner. Come to find out he worked up enough nerve to touch the food so he could throw it off my plate. Still hating the feel of the food. Any food, although he licked a graham cracker last night before getting angry at it. Ya never know...

We have teeth! Last week they started poking through on the bottom. One on the bottom is officially in and the one next to him is on its way.

The fortifying my breast milk is working, and maybe too well. He went from 16.13 to 17.3 in a week. Im going to weigh him tomorrow to see what he has gained this week. He is getting breast milk through the day, and I am giving half and half through the night. Im just going to do a slow wean through the winter months.

Hasn't needed any o2 since that last episode, and continues to do well off the vent. Tuesday will be 3 weeks off....I believe we are DONE!! Praise God....

Thanksgiving and busted g tubes =p

2009-11-24T16:26:00.003-05:00

Ok, so I'm thinking that when I accidentally yanked the mic key feeding tube out last week I started a slow leak in the balloon because today his onsie was totally wet with milk. The balloon had busted and had fallen completely out. It wasnt out too long because I got it right back in, but it took a bit more effort. So I have it taped to his belly and I'll get a new one from the pharmacy tomorrow. All my back ups are his old size, so that stinks! At least it is in and didn't close up this time. I will avoid any ER trips if I can....

He hasnt needed 02 again. I am thinking the J bunn (machine that give his trach moisture so it doesnt get dried out ) wasn't giving off enough flow. I kept it off him the next night and he did fine, wo we have had the flow turned up.

We are heading to my parents for Thanksgiving and staying one night. This will be Camden's first time traveling over night. Well unless you count when our house flooded, but that was just across the street. ;) It should be fun and interesting. I feel so blessed that he is now well enough to travel. No worries about vents and oxygen. I have 2 little o2 tanks just in case, and we are good to go. Well, along with all the "bags" that a trach baby needs. I call him "just a plain ole trach baby" now. ;p Nice to see things slowly leaving....

BLESSINGS TO ALL AND HAPPY THANKSGIVING! GIVE THANKS TO THE LORD FOR HE IS GOOD!

Needing to gain weight

2009-11-18T22:58:00.002-05:00

not me, Camden ;)

Went to see the nutritionist and surgeon yesterday.
Surgery was just a follow up and everything seems fine. Had an xray while there, which are always fun and consist of Camden having a major meltdown. I dont blame him. We wouldnt want to lay there naked either. We have to have another xray along with an echo in Feb, then will see surgeon again in March.

The nutrition was kind enough to squeeze me in yesterday. Camden is not gaining, and being off the vent burning even more calories is not helping. We are now adding formula to my breast milk. Plus I am having to supplement some, and we are extra formula to that. Will see how this goes. She didnt want to start pediasure since he isnt quite a year.

I have decided to cut back on my day nurses. This will start in December. I have been very blessed with my day nurses while I needed them, but it is time that I have a few days alone. I have been thinking about this for a few months now. I think the kids need this too. I am cutting out Tuesdays, Thursdays and Sundays, and went the vent leaves the house for good, the day nurses may be gone altogether. Night nursing on the other hand, I want forever.... ;)

not sure what happen with that last post....

2009-11-17T20:36:00.001-05:00

but here it is from Nov 15. That was weird...
Camden has done great with the PMV. When we put it on the first time he had it on an hour before we took it off for nap time. He has tolerated it well with out any issues. Very exciting to hear him. He groans a lot. lol Then he'll just be quiet. He sure can whine and cry with it too and is realizing that mommy reacts to it. ;)
Continues to do well "vent less." Tonight is my first night without a nurse wince he has been off the vent, so I have been blessed to get some rest while he has been watched. =) Daddy and I will be taking shifts again.

I am thinking of slowly weaning him off breast milk with pediasure. I will pump through the winter, but I am getting so done. It is wearing on me and my body is making less and less with more pumping. He will be 10 months old soon, so I will start mixing some pediasure with the bmilk and have him on pediasure by 12 or 13 months. I pray he tolerates this.....
Well, this is the plan anyway =)

PMV time :)

2009-11-12T17:03:00.004-05:00

The ENT visit went good. Dr. says there is still some floppiness in the airways. We are trying the passy muir valve tomorrow and I am super excited. I just called the Camden's RT to tell her how anxious I am and she said she'd be there at 1:00 so I didnt have to wait all day. ;) she is great...
Dr M just said we just continue to go through slow steps ( i told him i am used to that) to work towards getting trach out and that Camden needs to grow more too. I keep in mind that it is flu season and that there wouldn't be any trach removal now anyhow.

So tomorrow is an exciting day and I hope Camden tolerates the PMV. I can't WAIT to hear my baby!!!!!

Camden went out to lunch today! I dont go in public ( besides drs ) in fear of germs, so this was huge LOL I had to go get my other kids from Nana and we met a a little family owned diner. As soon as I walked in a man started to cough and I wanted to run out but I believe he was choking on his drink. lol not funny, but it made me feel better. ;) Mom sanitized a table in the corner, and we used purell 1,000 times, but we had a nice time. my kids were over-the-top excited to see their baby bro.
It was interesting to see how people act when they see Camden. I had to suction him a few times and no one could see me doing anything because I had him turned around, but you could tell on their faces they were so curious. I know people arent trying to be mean, it is just they stare. And stare some more. Not just 'checking things out' staring, but 'staring in between taking bites' staring. I try to put myself in peoples' shoes that aren't familar with the situation, but it is difficult. It is what I know now, so it is hard to remember that there was a day that i wasnt familar with trachs and g tubes. ;p I do understand the curiosity, I just get emotional about it at times.... ;)

Feeding is slow going. I am slowly increasing his rate on his feeding pump, but he seems to be wretching more. It is not just food related either because he does it in the mornings over secretions. Reflux, food, secretions...poor thing has many reasons to be wretching and gagging. I have wanted to rush things so badly and the other day I was thinking about it and trying to realize that I need to be patient and be thankful that there is a way that he can get nutrition, even if it is through a tube that goes in his stomach. I will continue to work on oral feeds and slowly the rate will get faster and one day he will eat on his own.....

Speaking of his feeding tube, bad me accidentally yanked it out last night. It has fallen out before due to the water balloon inside is tummy leaking, but this time the balloon was still intact and I pulled it right out of his tummy when I was getting him out of his saucer. ouch! I felt soo bad although he didnt seem too upset about it. I quickly put it back in ( last time it fell out during nap and the hole closed and we hadto go to ER )while thinking how the ER was the last place I wanted to be last night. It went right in everything is fine.

Cant remember if I mentioned it, but he is doing great off the ventilator with no issues. I have been giving him humidification here and there with his J Bunn but he doesn't seem to require too much. I think the weather change may change that but we'll figure it out as we go.

Bye Bye Vent

2009-11-10T17:17:00.002-05:00

We are so thankful that we had you for the last 9 months, and yes, you were a huge part of the lifesaving, but you are not needed anymore. ;)

I am overjoyed about this. Thankfully Dr H agreed to take Camden off the vent. All day, all night, all the time. He has been on during nights only, and on ridiculously low settings, but with this surgery setting us back it has felt like fooooorever. I just am over the long weaning process, and was glad she was considerate to my opinion. I think back to a day and remember thinking we'd never get to this point and here we are. No words can explain.....
So tonight is his first night off. Eek! Im excited, but I may be awake a lot checking in on the nurse. ;) I know he will do fine.....

Tomorrow the ENT. This is an exciting week. :)

Praise God from whom all blessings flow.

Doing well :)

2009-11-09T13:41:00.004-05:00

Camden is doing great. Everything has healed nicely without problems. :)

We just got back from the eye doctor and he says the eye looks good besides a little astigmatism so he wants to see him in a year.

Today I reintroduced cereal since before surgery and after the first bit he was over it. That was all I could get down him without him melting down on me and as soon as I stopped he was happy. ;p The cool thing is that he was touching the cereal on the spoon! And kept touching it! He also licked a cookie the other day. He eventually gagged over licking that cookie, but these are tiny steps forward.....

Now that his tummy should be feeling better I need to call the OT and get him back on his therapy. He is no where near crawling or standing so we need to start working with him now that this set back is over.

Tomorrow is the pulminologist. Hopefully we will be completely weaning off the vent. :) Then Wednesday we see the ENT and hopefully will be getting a passy muir valve. Hopefully he will tolerate it. Have a feeling he will be fine. ;) Im so excited!

Home sweet home

2009-11-05T10:45:00.005-05:00

This is him the day we were admitted. He completely freaked with all the people...meltdown after meltdown that first day! Him and I both were broke out with hives... :s He is happy in this pic because they were all out of the room! ;0)

Lots to say for the week that has gone by so I'll try to skip all the details so this isnt forever long...

We were discharged Tuesday and he is doing well.

We were admitted to the hospital Thursday afternoon and the cleaned him out with the Go Lightly ( nothing light about it) that night. He actually did very ok with it, of course nothing fun about pooing all through the night, but he tolerated it well.

Surgery was last Friday and was a success. Not only was part of the colon in his chest, but also his pancreas. Geesh. His diaphragm was patched again with gortex. But all went well and precious Dr W seemed pleased. His Nissan had also started to unravel so she went ahead and dealt with that too. He was circumcised ( which I was feeling guilty for doing to him afterward! ) and then Dr P was able to pop the clogged tear duct without needing a stint. As sad as it is, it took me a few days to get used to Camden without goo in his eye.

Had a rough night surgery night and then the next day too.( to be expected, of course) The cool thing was he was off the vent right after surgery and just on a little o2. His trach site was sore from the OR and he had some bleeding from it. Had some bad gas episodes and Im know he was in pain. He would scream when we changed his diaper. It killed me to watch him like this with that look like, " why are you letting them do this, mom??" I think the worst for me was when they wheeled him off for surgery. Third day post op he was a different baby and wanted to sit up. He didn't like me keeping him down either. He had lots of visitors from the NICU. It was great to see them.
He is such a strong boy. He is doing good now but has been really emotional. Yesterday I basically had him on my hip all day. He is not trusting anyone right now probably in fear of getting stuck! He even cried for his nurse that he loves at first, but warmed up quickly to her.

I can already see the difference in his feeds and he is handling then better. We will start slowly working on faster feeds now. I haven't given him any cereal or a bottle because I haven't wanted him to gag and hurt his tummy, but I need to get started soon.

Thanking the Lord this hurdle is over.... :)

My camera and computers are having issues so everything is phone pics!

headed to surgery....had to wear the dreaded yellow gown because he is forever labeled ORSA! ;)

right after surgery ;(

and his booboo. She just went in through is old scar, of course.

I just realized this pic is up side down....hmm

thank you for all the prayers......God is good, all the time...

waiting

2009-10-25T22:27:00.002-04:00

Getting closer and I have been getting butterflies every now and then. =) Wow, I cant wait until next week, then surgery will be over.

Same ole' around here, just waiting. Camden seems to be wreching a bit more, so I know he is ready to get his insides back in place.

"They that wait upon the Lord, shall renew their strength. THey shall mount up with wings as eagles. THey shall run and not be weary, they shall walk and not faint. Teach me Lord to wait..."

....somewhere in the Bible ;p

Surgery is October 30th

2009-10-18T22:18:00.002-04:00

We will be going in the hospital on the 29th so he can get cleaned out and ready to go....

Looks like some colon is behind his heart. Dr. W will be patching his diaphragm with gortex again and we will think about doing a more "permanent" surgery when he is older and stronger.
For now focusing on getting the intestines back where they should be.

They are not concerned with his testes at all right now.

Increasing his milk helped and he gained 7 ounces this week. :) Up to 16.11

Still the same orally, although he did lick a piece of my ham today. Weird. Of course he did start freaking when the tiniest piece broke off into his mouth ... I was quick to get it out. But for him to lick something other than plastic or cloth is huge.

Short and sweet, need to settle in for the night. If you remember, please keep Camden in your prayers with his upcoming surgery. Thank you :)

Well, they're movin on down.... ;0)

2009-10-12T23:03:00.004-04:00

Today we went to urologist and optimologist.

The uro. explained that if the testes were up in the belly somewhere, the surgery may be more involved and he wasnt sure if it was wise to do it at the same time as the diaphragm repair and compromise Camden's recovery. I totally agreed, but of course was wondering about Camden's future with waiting later to do the surgery. Long story short, after we discussed the situation he took a look at Camden and he felt the testes! They were down there, not all the way where they should be, but down there! It now wont be a two step procedure and we are super excited. :)

He had his eyes checked and he is getting the tear duct fixed. He had his eyes dilated because they want to make sure he eyes were healthy first, and they were. Poor Camden looked like he was on something the rest of the day. He was exhausted and fought sleep all day while we were at nemours, but came home, took a nap, and was back to his precious happy self.

The eye doc is pretty open to be there when Camden goes in so we are now just waiting on the surgeon to set a date. Hopefully we can find out a date soon....

The Family Jewels have been found...

2009-10-08T22:34:00.002-04:00

blood results say there are testes :) What a relief!! Thank you, Lord. One less thing to think about. So when he goes in for surgery they will be umm fixing things in that department.
WE go to see the urologist on Monday to discuss details.

Tomorrow Camden goes for a barium enema. ;( Guess the upper GI didnt show enough. That stinks. I hate for him to go through these tests.

One blessing is that he hasnt been wreching and throwing up anymore than the normal. Actually has just been wretching lots and just throwing up secretions, so not losing calories which is a huge plus since he had not been gaining. I have been sneaking a few mls here and there for the past few weeks and he is starting to gain now. Of course that is making it more difficult for me to keep up with the pumping. :-o It is getting tough...

We are slowly but surely getting things in order to prepare for these next few weeks.

Oh, Camden is clapping! So precious. I sometimes just bawl my eyes out thanking God for his brain function. Being on ECMO for three weeks was such a concern in this area. ( along with many others) He is a smart little booger. ;)

No More Daytime Vent, Nebs.... and more

2009-10-01T22:48:00.003-04:00

Since Monday, Camden has officially been off the ventilator all day. Just goes on at nights and we will chill with that for a while and not stress him before surgery. He is doing great with it.
He is also off his albuterol!! No more neb treatments. It is such a small machine compared to most of his things, but it felt great to pack it away. ;) Im just so happy for him...one less thing for him to deal with. =)

We had the upper GI last Monday too. I am still waiting on the blood work results from last week concerning his testes. Hopefully they'll call tomorrow since I have called the last two days. We still go to see the urologist and eye doc before finding out when surgery will be. He is on a slow rate of 80 ml an hour and doing better with that. Having some bad retching moments, but it isn't every feed. Bad days and good days. Breaks my heart to watch it though. I can't wait until this hurdle is over.

Orally he is doing awful. That is basically it. I have been so upset about it and it seems to be getting worse. I try cereal everyday, and he seems to hate it more and more. He is gagging worse now. Today he just lost it and once he gets crying over it there is no more trying. Plus we want to make it a happy time, but how do you do that when he is freaking out and dry heaving ;s ? It seems like such a long road in the eating department, like he will never get there. His spits out pacis and bottle feeding is pretty much a joke too. Now with the surgery I am afraid getting off track with things is going to be a maojor setback.

For now he is hanging in there before getting his diaphragm repaired. He seems to be attached to the feeding pump most of the day and night, but that is what we have to do for him to be able to tolerate it and maintain his weight.

This evening, Marcus and I took the kids on a bike ride in the neighborhood. Camden loved his stroller ride. The weather was so cool and nice and he was just checking everything out. Never fussed and was a sweet boy. Thankyou God for giving me this joy in my life!

A Happy 8 month birthday....

2009-09-22T19:07:00.002-04:00

Well it didn't turn out to be the best birthday for him. ;s We went to see Dr W today and after an xray she found that he has re herniated. Part of his intestine or colon is trying to move back up through the gortex diaphragm into his chest. I had a feeling this was happening with him not being able to tolerate the faster rate of food, but it hearing it today was difficult for me. His testes haven't dropped, he has a clogged tear duct, and he needs to be circumcised, so we are trying to get things in order to do all of it at once. So, busy weeks ahead to prepare for surgeries. In the mean time we will continue to feed at this lower rate and pray he can hold out to get things in order.
Camden is definitely not acting like himself. It takes a lot to get him to smile when normally I cant get him to stop! But he is a trooper as usual.
Well, it was a nice hospital free time while it lasted. ;) Tonight I am thanking Jesus I have Camden home and healthy enough to be able to even have surgery.

A few steps back....

2009-09-19T18:55:00.003-04:00

in the feeding department. Camden still wasnt tolerating his 9am feed, so we have slowed the rate and started an hour later to let his stomach have even more time to digest the continuous night feed. He hasnt vomited like he did since we have done this, so it is helping. Maybe his nissen ( surgery he had to stop things from going up the esophagus) has unwrapped completely or maybe his reflux is just getting worse? He was tolerating feeds better before, so something has changed.
:( Feeding can feel like a daily battle, but I have to focus on the fact that is getting in and he is digesting most of it and still gaining. I am still working with the bottle and cereal and things havent changed much with that. I do know that the little cereal he does get down is more than he does when sucking the bottle.

He is still supposed to be on the vent at night and during the long day naps. It is starting to not be that way. The day goes by and sometimes it just doesnt work out to put him on. It is like you dont want to interrupt him when he finally passes out, or you think he is just taking a cat nap and the nap ends up being his long one. I have many excuses to give Dr H. ;) Usually he goes on one time a day for a short time and he has been on EVERY night. I am obeying in that department. :) We go back to the pulm at the end of the month to see the next step with the vent.
Anyway, he has done well. Not one disturbing episode. God is good and I cant think about it without crying. My little miracle.

We are just hanging out as a family minus Micah tonight. She went home with Nana. Our regular night nurse who we thought was gone for good is supposed to be coming in at 11pm tonight. Supposedly she will work some nights for the rest of Sept, then will not be doing night shifts anymore so we probably wont be seeing her much after that. We will miss her! Very difficult having different people coming in and out every night, but God will work it out. My day nurses may be gone in a few months, but he should have night nurses much longer. I pray that we will have a couple of regular nurses so he doesnt have to wake up to strangers.

This week we go see Dr W his surgeon and will be checking out his diaphragm. We also see the nutritionist so maybe we can think of a better eating plan. And I spoke too soon, he just threw his dinner up so I guess it isnt just breakfast. :(
Busy week, so I may be slacking to get on here but I will try. Thanks to those who continue to pray for us.

Restless ....

2009-09-13T23:21:00.003-04:00

Tonight Camden has been squirming for the last couple hours. His reflux is acting up which may explain why his day feedings have been worse the last few days. He is still having issues with the morning feeds too. Threw up some of his breakfast again this morning, but not as much as he did in the last few days. He also had a hard time during his lunch today with lots of gagging and retching, but it finally passed and he held the food down. I hate to see him suffer and I feel like I am force feeding him!! It feels like a losing battle at times. I want to cut back on feeds but can't or he'll start losing weight and he is just gaining what he needs to as it is. We are now at a rate of 112 ml an hour and he takes 145 ml so it is taking about an hour and 10 minutes to feed him during the day. Feeding is such an ordeal. ;( I think I am going to hang out at that rate for a while and let him adjust to it for a few days. He is still on a continuous feed all night and still does well with that.

I am being more aggressive with the bottle. I got 15 mls down TWICE today singing this song like 15 times in a row :

"Jesus, Jesus, Jesus.....there's just something about that name. Master, Savior, Jesus, like the fragrance after the rain. Jesus, Jesus, Jesus, let all heaven and earth proclaim...Kings and Kingdoms will all pass away, but there's something about that name....."

I have to keep his attention! =p We sing this all the time. This is one of the songs I used to sing it to him when he was in the hospital when he just lay there with his eyes closed. I just sang when I didn't know what to say anymore. =)

Our night nurse called in again. The one that is here the most and the one we love! I hope she is ok...we haven't seen her in over a week. =(

another week gone

2009-09-12T14:18:00.004-04:00

that is what I am feeling like lately. The weeks are flying by. Normally I cant stand it; to see my babies grow so fast, but I am loving it with Camden. Means he is getting stronger and closer to being trach free. =)

Eating: He has thrown up his breakfast the last two days and it was almost all of the feed. Not understanding this. He held down the other feeds, so I am trying to figure this out. And it isn't gag related because it wakes him out of his nap sometimes. I am going to try to give him his zantac an hour before his morning feed, but other than that I am at a loss.

He is still gaining, and last week weighed around 16.4.

I am trying cereal everyday and he tolerates more and more each time. Ends up getting about a tablespoon down. He tries to ignore me the whole time but tolerates me gently force feeding him, lol, then he will let me know when he is done by shaking that head NO! Bottle feeding is still the same. Sucking but not getting any down. Still at 5-10 mls, but sometimes only one. Looking like he may skip bottle feeding and go straight to spoon. By the time his suck gets stronger, he will be getting older and older and ready for sippy and spoon anyway. We shall see...we never knwo from day to day!

We are enjoying him so much. This age is so fun. He be 8 mths on the 22nd. He loves playing silly games with us like bumping our heads and he is always laughing. It is silent of course, but is looks like a big laugh and I can just imagine how it would sound. =p He is always making us laugh!

Our night nursing hasn't been great. ( To the point where we thought about changing companies but we didn't want to have to go through all new nurses because our day ones are great!) We would be OK if we knew the night nurses were calling in, but when you aren't prepared and you find out a couple hours before they are supposed to come, it gets frustrating. The first night is OK, but when it happens the next night and once again, you aren't prepared, you feel like you wanna cry. Marcus and I still do shifts, but with pumping my sleep time gets less and less and I am sure there are times my kids wished they weren't home schooled stuck in the house all day with zombie mom. =p Thankfully this week was better and I seem to have more coverage. The other difficult thing is dealing with new nurses. You get so comfortable with your main ones and when they have to call out you feel like you have lost a friend. ( my how life has changed )

And did you know that they actually will send "whoever" out just so you have coverage? ( when they can actually find coverage ) then you cant sleep anyway wondering who is spending the night with you. So, I have pretty much kept my mouth shut about the nursing situation on this blog, but that is how things are going in that area. =)

After getting so irritated about things, I started to think about how blessed I am to have Camden here to be able to deal with night nursing problems! =) woohoo!!!

Please pray for baby Mack and the rest of the Harrington family as they are going through a rough time with Mack being sick in the hospital....

Lots of updates :) and pictures

2009-09-06T22:46:00.003-04:00

the brothers :)

coffee drink as big as his head ;)

Loving the park

about to say good bye to the bouncy seat!

First off, we went to the ENT last Thursday. Dr. M walked in with the nurse practitioner and called Camden a "miracle child". How true that is and hearing those words just made my day. He is such a miracle! Everything looked good and if things continue to go as they are, we are still looking at getting the trach out during springtime. We need to get through this flu season first and of course wean completely off the vent.

He rolled over this weekend! He has been rolling from his tummy to his back, but finally did it from back to tummy. Hasn't done it since, but now we know he can. I believe his right arm gives him a fit, so he cant move it to roll on that side, but he did roll to the left. His bad arm is the one that looked awful while on ECMO and I dont know if that has anything to do with it, but it is his weaker arm. He definitely has problems with it. When he is having tummy time, that arm cant hold up either and he cries. I sometimes wonder if it hurts him.

Camden is pretty much sitting up by himself now. A bit wobbly, but can sometimes stay up on his own for a minute or two. His core is getting stronger each day.

He has taken a few steps backwards with the bottle feeding. THe last two times have been unsuccessful. He actually cries and shakes his head NO. I am not sure what is happening there. He seemed like he was making good progress. A speech therapist is coming to evaluate soon, so hopefully she can give me some tips.

We took him and the kids to a park on Friday. It was our first real outing together besides when we took him to church last week. It was a nice, overcast day and the weather felt nice. Camden loved it! I got some nice pictures of all my kiddos together and I immediately starting thinking about last Easter when Camden was still in the hospital and i had to take pictures of them without him. I remember holding the tears back trying to be strong for my kids. I had driven to my parents house ( they had been spending the week there ) to see them and be with them for the day. I was so torn because I had to leave Camden all day in the hospital, but yet I had promised my other kids I would come eat Easter dinner with them. I sometimes get emotional when I think of it, and I just thank God those days are over.

Over the weekend....and pictures

2009-08-31T23:05:00.004-04:00

First time trying cereal...he did so well at first, and now gets upset and shakes his head NO when I try. ( That is another story....)

This next pictures had us hysterical! He just sat there watching us laugh!

Camden and Nana at church

Camden was dedicated at church this past sunday. It was a very special time and mommy was very emotional. =p We left right after we went in front of the church and Pastor Kevin prayed. I am a bit nervous with the flu going around so we stayed away from everyone. It was a great day! No pictures though..... =(

He is doing well off the vent. It didn't seem like it was going to be that much more time off, but now that we are doing it, it really is. I think he only napped around 2 hrs all day today. That is a lot of time off. We are suctioning much more now too. That and the fact that he is completely silent are the bad parts about being off the vent.

Quick update on today's appointments

2009-08-28T21:24:00.003-04:00

Camden will be off the vent all day except for his three main naps. Basically he'll be on the vent around 3 hrs a day, and then he also stays on all night. This is progress, I just have been feeling so impatient. =( I have to stop trying to rush him so much. ;)

He felt bad today due to the shots last night. Poor thing woke up with fever and was so cranky all day. I hope he is back to himself tomorrow. I've never seen him like this before. :(

As for Micah her echo looked good and we will get the results of the monitor Mon. All in all things seem to be fine!

Im sleepy and my husband is taking over until the 11 pm nurse comes in so that can go shower and nap. Thankyou for your prayers. =)

Lots to share :)

2009-08-28T03:33:00.002-04:00

I have been putting off blogging in hopes that I would find my camera equipment to share pictures, but that still hasnt happened so you'll have to use your imagination. =)

Camden has tried rice cereal and squash this week. He did great! Swallowed it and it didnt seem to phase him much. I am impressed since we thought he wouldnt do well with all his oral aversion issues, but I am thinking those issues are almost gone. He still gets upset with some things, but overall he is doing great. After a few bites he would cry or shake his head no and I stopped, but I think he'll do well with this after getting more used to it. As for the bottle, we are still trying but not getting any down--maybe 5 mls. I still work with him at least 3-4 times a day.

He is now weighing 15.14 according to our home scale. Dr. C came to see him today and he got his RSV and dtap shots. ;( ( did i ever share that his ped comes here to see him and she is so precious?) The first shot I made him laugh through, ( he cried for a second, then laughed)but the dtap was a stinger and he was crying so hard I could almost hear it coming around the trach. Poor baby. THen he was just angry for a few minutes after that and I believe I saw him giving the doc "mean eyes" lol Few minutes later he was smiling. What a darling....

Physically Camden is doing wonderful. Actually more than wonderful. He has progressed so much in just a week. He is so close to sitting up, and the OT was impressed with his progress today. She hasnt seen him for two weeks, so he has changed a lot since then. He seems to want to start inching his way around too. I think he will get the hang of it real soon. Tummy time is becoming easier and he is very close to rolling onto his stomach. His arms just get caught underneath him and he just needs to strengthen them. For where he has been, he is doing so great. I am literally watching this boy heal and grow stronger everyday.

His reflux took a turn for the worse this week with lots of gagging and throwing up during feeds, then today he did wonderful! It just acts up when it wants! I hate it for him and just pray for healing in that department. We are up to a rate of 104 on the feeding pump. So about an hour and 15 is how long it takes him to be fed through his g tube.

Tomorrow we go see the pulmonoligist. Well, today since it is 4am lol ( yes, no nurse, 5th night this week..that is another story) I am very excited to see how many more hours we will wean him off this ventilator! He has not had one issue on his time off of it so far, and not one issue since we have taken the oxygen away. I am praying for all day off, and on for nights only but I think I am getting too anxious. ;) I just want this trach out. I want to kiss all over his little neck and hear him cry. You will probably hear me say that again because I think about that day almost everyday. :)
SO, tomorrow I will give the update!!

On another note---my daughter, Micah was having some heart issues that i was concerned about. Some odd high heart rates....anyway she is having some tests ran and goes back to the cardiologist tomorrow. Daddy will have to take her while I take camden to nemours so please pray that marcus will pay attention to what the doc says. Just kidding, ( kind of ) but please pray that all is ok with her. It was probably nothing, but I wanted to get things checked out, and her pediatrician agreed. Micah is wearing her heart monitor thingy and is milking every minute of it. I had to sponge bathe her earlier ( i did it like we do camden, so she thought that was wonderful) since she cant get wet and she is loving this special treatment and attention and shows her wires to anyone she sees. Little stinker. so, updates on that soon too.
thanks all =)

My Blessed Life With Camden James....and a CDH journey.....

Nissen streching #3

Hospital stay....

Update for the (almost) New Year!

no surgery.

Surgery update....

Potty Training.

Getting some surgeries behind us!

August update!

July is here......!?

JUNE Update!

Feeding rollercoaster continues...

Back home & no surgery

Nissen Surgery

Gainesville appointment updates....

These are my favorite posts to share....

And it's stuck.....

Please STAY DOWN.

Surgery Update...

Melt my heart....

Gainesville appointment updates....

Bottles at 2?

Swallowing update and ENT visit

Precious Maggie

Prayer request

An answer to the problem!

More testing...

2 year old updates =)

Upper GI and Gastro

January

A New Kid....

Good stuff =0)

It continues...

Camden in November

The endless feeding drama

*sniffles*

Quick Update

Busy with moving...and a little update on my boy...

Few Camden update =)

Officially WALKING!!

Another test...

walker and GI issues...

Glad I got the walking on video...

really big "steps" tonight....

ENT visit and the fourth

Busy June

The beach, sipping, and other updates...

It really happened.....

Camden is officially a LICKER

Putting things in perspective.....

Ordering Medical supplies

Unexpected PICU stays YUCK!

His First Word @ 15 mths old

ok, so that answers that ? of the day...

Milk allergy

Camden's new move and new diet...

A few updates in the Camden world....

CDH Awareness Day

Louder and faster! =)

Thanking Jesus...

Good day

Ear tubes tomorrow

Shots and O2

Rocking on all fours one morning...then later that day Im....

Just more updates =)

short update

More tubes

Sick, again

Jenny Craig....

HAPPY BIRTHDAY MY SWEETS!

"It will happen..."

ENT appointment, and bottle time

I'm back... well almost =)

Glad to be home =)

My favorite things to do:

Weekly Camden update and Christmas time

First sickness

Well......

Got oral aversion?

It's official

sniffles