Update for the (almost) New Year!

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.

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....

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.

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!

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!

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......!?

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!

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...

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

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

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....

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....

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.....

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.

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...

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....

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....

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?

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

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

...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

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!

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...

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 =)

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

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

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.