No more "tubeless"

Surgery is set for this coming Monday at WCH. Gtube will be placed in his old site. We should be there a couple of nights. After taking him to the GI and having the BRAVO placed and an upper GI they think there is no need for the prevacid anymore. Apparently it seems the nissen wrap Camden has is working well enough. He has starting gagging more and not eating as much, so Im going to have to disagree. He did this last time I tried taking him off the prevacid. But that is another story... We went to see Dr P, a surgeon who we have heard of since Camden was born but we already had one at that time (who has moved). Camden's current surgeon, Dr K, has moved as well, so I thought for things like this I should find someone closer. Dr P lifted Camden's shirt, looked him over a few seconds and already had his opinion, agreeing that he needed a feeding tube. He was not only worried about his low weight, but also that he wasn't getting enough nutrition for healthy brain and body developement. He goes out to Afghanistan soon, so we have to do surgery before he leaves. (Thank you for your service!!) I felt very comfortable with him and really liked him. With Camden being older, things are so different now. Having to explain what will happen, what pain he may feel, and then seeing the concern on his face is difficult. I keep assuring him this is going to be a good thing. As much as I hate to see him go through ANOTHER procedure, I am so ready to see him grow stronger and look healthier! People have recently asked things: "Will he still be able to eat?" Yes. He will eat just like he does now. I am thinking I will run the feeding pump very slowly during the night to get his extra calories in. Hopefully that will do the trick and we won't have to go to day feeds. "How long will he have it?" As long as her needs it. I am thinking years. I am in no rush to get this out and have to do this over again! We will know when Camden has learned to eat enough to maintain his weight. He needs to grow more and be able to consume more. "Does it hurt?" "Can he swim or get on his belly?" Once it heals it shouldn't hurt at all. There may be sore days for different reasons, but overall it shouldn't hurt. He can swim and get on his belly. He will learn to favor that area and we could even wrap it for a certain activity if we needed to. The tube can be pulled out of his belly but hopefully that won't happen since he won't be hooked up to feeds during the day. When the feeding tube is disconnected, it just looks like a flat button on his belly. Thank you for loving our boy. He is our JOY. And really, overall he is doing incredibly well!! Thankful to our Lord! Blessings! ~ Devon =)

A busy March.

It has been a year since my last post. A lot of "life" has been going on for Camden, but mainly good. He even got a new baby sister last December and is officially a big brother. He has been sick a few times and is having a difficult time fighting things off once he gets them. I have to remember he is lacking a spleen. He has been sick for a few weeks now but after an ER visit with a shot of Rocephin, he seems to be on the mend. As far as meds go, he is still on Prevacid and a prophylactic antibiotic. So here we are with new concerns: Camden's gtube has been out since around the time he turned four. He is now seven, and not thriving. We have tried for 3 years to get him to gain. The issue is no longer oral aversion! He LOVES food. He loves to taste new things. He isn't picky. The problem is what happens after he eats and how he feels. This part of it has gotten worse. He feels full too fast & constantly complains he feels like he is going to throw up. (which he can not do because of nissin surgeries) Breakfast is out of the question and by lunch and dinner time he is slowly trying to eat to catch up on calories and then we realize we haven't reached out goal for the day. Every day. Sometimes he will surprise us and eat a lot of pasta! You just never know. With all the surgeries he has had, who knows what the culprit could be. His stomach is smaller now because of the surgeries as well. But what I do know is that it isn't ok for him to be 36 pounds being 4 ft tall and 7 years old. I took him to Nemours in Jax to see his old GI doctor. Some of his words were,"..we need to act fast..." which confirmed for me that I wasn't just being that complete dramatic crazy mother that many already think I am.;) I have been concerned over this for a while as I watched him not gain what I felt like was enough. In the last couple of months he has lost 3 pounds and that is when I decided we needed to go see GI again. We are going to do an emptying scan this coming Thursday and then an upper GI with the Bravo (which he will need to put under for) on the 28th. Camden is also going to need a gtube put back in. I would be lying if it doesn't make me a little teary eyed when I think of it, but I think it is more because I dread his little body being cut on again. I think the scar tissue he has scares me the most. And the anestesia. And the fact that he is older now and will remember things and be so nervous before he goes under. We will also go to ortho on the 23rd to do our yearly scoliosis check. (We skipped last years check up which I felt totally fine with, so he is due for one) Im sure things will be ok. Some wonderful things I am thankful for: He can run around. He is such a happy child. He is so smart and his reading is amazing. He is in 1st grade and has joined his siblings in the homeschooling journey on the Roell Homestead.:) His breathing has been excellent! He hasn't needed oxygen in 2-ish years and I don't see him needing it any time soon. His recent Xray showed his diaphragm patch still in place. Thankful. Thankful. Thankful. I do not feel getting a gtube is a setback. I think of it as a boost for his already good AMAZING progression! I can't wait to get my boy looking and feeling more healthy. It has been 3 years of a struggle and we just kept thinking he would eventually gain while we kept trying new ways to gain and new ideas. It just isn't happening, and now his weight is concerning and scary. I will post results for tests and surgery date.

Above is Camden getting ready to go hunting with his brother and then him on his 7th birthday with his buddy, Jase and his little sis, Avonlea in the back. I hope all of our fellow CDHers are doing ok. I haven't been in "blogland" for a while but look forward to catching (with those who don't use FB) up in here.

Spring update! :)

Well, it's dr time again. :) we have had a nice break and Camden has been very healthy and still is. He is due to see his orthopedic surgeon to check his spine for scoliosis which is common in CDH kids. Our main concern has been his blinking. It is very significant and has been getting worse over the last two years. We saw opthalmology last week and his eyes are great so we are seeing neurology this coming Monday. I've thought the excessive blinking was neurological all along, but they always want you to check the eyes first so that part is done (and I'm thankful his eyes looked good especially with his momma and Nana's bad eyes genes!) So, we will be heading back to Nemours this month and next for some check ups.

Happy 2014

It's going to be a good one. :) Camden's Trach hole closure went well and is healing up nicely! He turned 5 on the 22nd! He was so excited about his birthday and was counting down the "sleeps." He is such a big boy. We are working on learning to read right now. He loves to sing and do his 100 piece puzzles. He EATS so much and loves trying new things as well. Finally gained a pound and is a whopping 31 pounds. ;) He has also stayed healthy all winter long which we are so thankful for. Other than the ENT post up check ups, we have stayed pretty much appointment free. It's been lovely. :) Enjoying him each and everyday. Love my Camden James. thank you, Lord.....

Same Old Butterflies...

The date is set for Camden's trach hole closure. Oct 30th at WCH with Dr Maddern. He has had a nice, hospital free, long summer but we are ready to get this done. Every time surgery is officially on the calendar, the random butterflies start then get stronger until the day of surgery. This is a minor surgery in comparison to what little man has been through, but it is still hard to know he has to go under again. He will go to the PICU to be monitored, then to a room. 1 night stay (oh thank God how I dread when we have to stay longer!) then home we will go. He will have to have little drain tubes for a few days as well, so we may have a couple more trips to Jax. I know he will fly through it. There are a lot of emotions for me when I think about this surgery. It feels as though I was just in a room with him on a ventilator wondering if he would ever breathe on his own. Here we are, almost 5 years later, and he is getting his trach hole closed. He did it. He breathed on his own and now that part of his journey is over. Still takes my breath away sometimes. We are so very blessed. He sure is going to look funny with out that little hole in his neck!

Doing well!

I was having concerns about Camden maybe reherniating so I took him to gville today for an X-ray. We were almost due to see Dr Kay's anyhow. X-ray was clear, I was wrong, very thankful! He has lost two pounds (down to 29) since gtube was taken out, so I am going to try to work harder on his diet. Tonight he ate a whole "abacoda." ;-)  He loves avocados!

We will go see ENT towards the end if September to schedule Trach closure. I didn't want him to have restrictions with swimming through the summer, so I have put it off. We did teach him to swim, but he is far from a strong swimmer, but we have had a lot of practice! With time he'll get there!

I can't believe my baby is a little over 4.5! Time seems to go by way too fast. Trying to enjoy him as much as possible without worry. So hard not to think about the what ifs at times, but I'm doing better. ;-)
thanks for caring for my boy. <3 p="">

A break.

It has been just that. =) A break for my little man. He has done amazing in the eating departnment. No gaining, but maintaining. Tall and exremely skinny. ;oP We are putting off trach closure. After his last surgery on his private area, I decided we were going to stay hospital free as long as possible! He has done well since then. He did get a tummy virus and had a few gagging episodes. Ever since then he has had a slight cough which I think is related to reflux so I am going to watch him and maybe think about getting him back on the reflux meds. Other than that he is well and I am thankful and just enjoy this blessing daily. I never take him for granted. Thank you, Lord....
Here is a recent picture with his new puppy, Scout!

Feeding tube is officially GONE!

yes. A little over a week ago. It happened extremely fast for me. We went to see Dr Kays for a few month post op check up and I told him how well Camden has been eating and that although emotionally I was ready for the gtube to come out, I knew he wasn't going to ever need it again. So, we took it out! Camden did very well with it. I thought he was going to have a hard time dealing with this piece of plastic that has been "on" him for almost 4 years all of a sudden missing. He asked for it for a few days. A couple of times wanted to try and be mean and say, "Im not hungry! I want my tube back in!" (BTW- he is so stinkin' funny and cute when he tries to be mean and it lasts for all of 2 minutes) (What is bothering him is the granulation tissue that is left form the tube. he says he wants the dr to "cut it off" so we will deal with that later down the road.) Now, me on the other hand...I would well up with tears here and there through out the following days! This tube that his life has depended on for so long is gone. While I was so thankful for his progress, it just seemed so strange. He has only been truly able to eat by mouth for about 4 months and I was just adjusting to that. Then it was the cleaning out of med supplies (throwing away all his used equipment, and donating all the new) really hit me. I haven't known anything but Camden with medical supplies. He only has O2 equipment now, as needed. WOW. I am now adjusting (like this blog is all about me lol) and am so very proud of my little man. He tries everything and looks forward to eating. No more crying over food, he fought through the aversions. No more gagging, choking, retching....we finally know what was causing the issues it is fixed. (thank you, Dr K!)

It has been a long, emotional 4 year feeding journey to get him here, and we did it. He did it....

Thanksgiving was amazing. He enjoyed a plate of Thanksgiving meal for the first time and wanted to know what everything was with a huge smile on his face!

Next surgery is Jan 3 for trach hole closure and he's getting the "boys" brought down where they need to be. After that he will be 4 on the 22nd and we are praying for a calm, hospital free year!! Now, that would be nice! =o)

Thank you, Jesus.....

Cardiologist follow up in .... ONE year?!

Yep. =o) Heart cath went great. Camden recovered from anesthesia for several hours afterwards then was walking around as if nothing happened. He said, " I'm fine, momma!" 
We did find out the his pulmonary hypertension is mild. I am ok with that and was just thanking God is wasn't severe!

The odd part, (but good) was that the PDA was too small and insignificant to repair! Dr said he could have tried if I wanted him to but said it wasn't worth it, so I let it be his call. He is 100% positive it isn't causing any problems, and I trust him. He said he will see us back in one year! 

This time getting him put under was awful. The Versed wasn't working and he wanted me to take him back to the OR. He fought and fought and we all had to hold him down to be put out. I almost feel guilty that I am so tough about this. After 15 plus surgeries I have had to buck up, otherwise I'd lose it  everytime I had to give him over to the OR, or watch him recover from surgery, or see him scream over an IV. (WOW he hates IVs!!-that was the hugest issue this time around!) Anyways, I was just thinking about this the other day as I watched him recover. I did have a 30 second break down the following day, but I recover from those faster these days and I dont have as many. God's Peace.

So for now, we have some appointments set with ortho, ENT, and urology and hopefully he will get a nice couple of months break from the hospital.  

Heart Cath This Tuesday

Well, Tuesday is the big day. I am focusing on the fact that this is a heart cath meaning less time under anesthesia and only ONE night in hospital! Camden and I have been already talking about it. He is asking about "hurts" and IVs and if he'll be able to watch certain movies again. I tell him it will hurt a little, but daddy, mommy. and Nana will be by his side! He is so tough but I hate that he has to deal with this! Goal for Tuesday is to measure that stupid pulmonary hypertension that decided to sneak in on us again and to plug the itty bitty hold in his heart valve. After this we have ONE more planned surgery!!! Almost there! I have appointments already set up with ENT (trach hole closure) and urology (bring testes down) so we can try to set things up in JAX for both procedures at once.

As for eating! WOW! He is eating A LOT. We were laughing so hard the other night because we actually had to tell him "no more" because we thought he was going to bust. ;oP I never thought I'd have to say that to him. He'll eat a ton, then graze a bit. We did have to go to some night tube feeds because he was obviously losing weight, but that is ok....not even a worry in my mind about losing that tube because he is doing awesome in that department.

Please pray for my little man but also for my dear friend, Shannon's baby Madden. He has a mito disease and is having some breathing and seizure issues. I love this family dearly and am hurting for them as they travel this journey and they need prayers. Thank you all <3 p="p">

Um, OKAY! I am going to say it.......

We have an eater. After 3.5 years of tube feeding, my son is eating. I havent given him any tube feeds this week. I almost can't type that. He is skinny, and Im sure outsiders that do not know us or our situation will judge, ;oP but that is all good, because my son is eating.  You know, with his mouth? He is eating pb&js, eggs, pasta, chips, rice, beans, on and on. He is still a packer, but he realizes this and is TRYING and is DOING it. I may need to give some tubies down the road if he starts to loose too much weight, but that is ok, the tube is on its way out & Camden reminds me of this daily. Today it was, " Im gonna get that tube out and your gonna throw it in the trash." Amen, lil man.

5 week...ish post op =o)

Camden's incision looks perfect. I haven't blogged because I have been busy and for a few weeks I felt bummed and didnt want to post bad news. He had been choking pretty badly up until a week ago! He is now eating and choking periodically, but so much better! I believe the surgery was a success for the most part and the choking is caused by his esophagus being "smashed" for so long. Well, that is what MY thoughts are on it, but tomorrow we will go see Dr kays and hear his. ;o) Now that we have the physical part "fixed" we have to start tackling the emotional/mental part. Any parent that has had a tube child will understand this. 2 years of NOTHING in the mouth, never learning to suck in those beginning months, then eating off and on this passed year etc, makes a difficult road in learning to eat properly. He wants something, then he doesnt. He cries. Then is happy about the same food he was just crying over. Then he packs it all in his mouth and cant swallow so mommy steps in and he is screaming that he wants to do it, because he can feed himself but packs the food all in at once. But, we are moving forward and that is what matters! Today I was thinking back to the videos I have of him screaming and crying at the food on his highchair. We've come along way!! I am thankful....

Tomorrow after we see Kays, we will see our new cardiologist, Dr Fudge (have I mentioned we love him?) for pre op for the heart surgery. Yep, I have scheduled the PDA repair for the 18th of September! I have been so ready to get these two surgeries behind us. We are almost there! Tonight I had to explain to Camden that he has to go see Drs and that there wont be any "hurts" this time. He sighed at me and said, "Mom! Im all healed up" There is definitely something wrong when you have to tell your 3 year old that he wont need an IV tomorrow and then watch him be so excited about that. Maybe the medical field is in his future? ;o)

He lost a few pounds but looks ok! He did have another extremely low HR last week. The cardiologist had told me to not startle him so I didn't. That was a long 2 minutes for me! =o( But after alarming 16 (yes 16 for the HR) he recovered on his own and it shot back up. Still not understanding all this, but oddly, it may just be Camden's normal. =oS Like I said before the low heart rates, according to the Drs are NOT related to teh PDA. I am trying not to dwell on them because they arent happening a lot, but it's in there...ya know, in the back of this mind of mine....mommas just cant help it.

So! Moving forward! =) Thanking Jesus for my little man who brings me so much JOY....

Home!

...and so happy to be here.  Where to start...I saw a few CDH momma's with concerns when they heard about Camden's situation. This was rare and we were all surprised. First off, those that have followed my blog know that Camden has been battling oral feeds since he was 2. (well, his whole life but for other reasons. I say 2 because that is when we found this other problem) He is now 3.5. We have blamed the nissen being too tight, and have had several dilations through endoscopy which didnt help much. It has been extremely bizarre to say the least.  He would eat for a few days, then choke for the next week, and that has been his life for the last year and a half. We started to notice this when he finally decided try something orally when he was around 2. Basically he has been all gtube fed during this time and what he did eat by mouth (that actually made it through to stomach) was a little extra calories and he is still a skinny head. I was asked about symptoms and I have already explained a little about the choking. Food would actually come back up undigested, so I knew it wasnt hitting any stomach acids. He also cant throw up with the nissen, so I knew that it had to be esophagus or nissen related. (but I was wrong- it was actually around the esophagus but you cant see that with endoscopy of course) he also had random, strange sounding hiccups and a reflux-like cough here and there, (though not bad) but that could be related many things!
   So! Friday was the big day and I was not feeling 100% confident in this surgery. I knew I had a wonderful Dr, I just was so scared of him being opened for the 4th time. (BTW this was Dr Kays first time inside Camden. He has done other minor surgeries, but never open, major surgeries. He didnt have Camden at birth (but he had awesome care at WCH!!) Dr Kays talked with me before hand and said he needed convincing as well, which didnt help me be anymore convinced. =o/ Off Camden went to the OR and he was so brave and never cried. (Isnt that one of the worst feelings? It doesnt get easier watching them be taken away) I got a call not too long after from Dr K telling me that he had done an endoscopy and that YES! this nissen was way too tight and he thought he'd put me at ease knowing that we were doing the right thing. 
   Surgery was taking too long. Way too long for just a nissen. I was trying not to panic. Finally got a call from a nurse telling me that they had found other problems and that they were starting the nissen at that time and that Dr Kays would tell me all about it after surgery. =0/
The nissen was NOT the problem.  It actually looked ok, but he DID redo it leaning towards the looser side, just incase it was a bit too tight and we didnt want to take any chances. The problem was where gortex (his fake diaphragm) had been put around his esophagus during his last diaphragm repair to re-enforce that area to prevent any organs from trying to get back into chest cavity. What happened is that it was squeezing the esophagus causing food to get stuck in that area, totally causing us to think it was the nissen being way too tight. It was just something that no one would have known until they were inside. Wow. So the surgery definitely needed to be done!! Thank God!
   I knew these surgeries weren't going to get easier the older he got.  The last few days have been so very difficult. He was scared of everyone all over again and screaming when people walked in. Just as he was starting to get used to all the routine stuff today, we left. =0P He got an appetite back yesterday and we had to say no to food, which led to crying, which led to pain. The gas was so bad and he would just cry and cry. I was thankful for the gtube to help relieve it. Watching him hurt is just heartbreaking. I just kept telling him Dr Kays fixed him and that he was going to eat with his mouth one day! oh, and the IV flushing.....did anyone hear him screaming?? =oO
   Today is post op day 4 and we are home. They wanted to keep him another day to watch him eat and that was silly. I told them I can do that here. He is getting back to himself and walking all around. I just give him Tylenol as needed because he is really doing great with the pain. He only needed O2 for about 24 hrs. I was so worried about him being under that long and he rocked it. He is  Mr Grumpy pants a lot right now, but he is allowed to be. He told Nana and myself several times to "Go away." =0p Love this kid and am so grateful that he is home with us tonight.  Feeling extremely blessed. 
  I have him on a slow feed drip and I am going to keep him on soft "tastes" but he is already fighting me for things he shouldn't be eating yet. Gonna be a long week of saying "no." Now, we wait. We wait to see if things work the way they are supposed to these next few weeks. We wait for him to heal and get ready for his heart surgery. 
  Hope I explained things well enough for those who were curious. Feel free to FB message me if I left something out.

Thank you to all who have prayed for our little man...

and thank you, Jesus.

Surgery tomorrow

So the waiting is almost over, but here starts that pit in my stomach.  I was at complete peace about this, but here it is the day before and I am wondering if "we should wait" or "maybe it will stretch enough so  he can eat properly" etc. My main concern is how he will do with this longer surgery. He has only had really short ones these passed 2 years. Im worried about his little lungs and hate that they have to go through more stress again. His body has been through so much and I just want it to all be over for him. I hate that his CDH scar has to be cut open again for the the 4th time, knowing that he will need to be cut on again for the 5th time someday in his future. I know I have to take one day at a time but you cant help thinking these things. I do this every time. He has actually been getting a little bit of food down in the last few days, but he has done that before too.  Ugh. Anyhow, surgery is on and I will call tonight for a time.

I have to return heart monitor. The 30 days are over and he only dropped (super low) once. I am not even sure if I was able to record it properly, but hopefully I was able to get the tail end. Like I said before, when he is startled his heart rate goes back up quickly. So, basically all that has come out of this odd heart issue is me worried when he goes into really deep sleep, therefore Camden being back on a pulse ox every night. Again. =/ He has done this dropping before 3 times in a week, 3 times in a month, and then once this month. So, I don't know when he is going to do it but I do know that is scares me to death when he does. So, back on pulse ox. His O2 sats have been a little off as well, so I need to watch those anyway....but that is another story for another day.

He is looking fuller and healthier with the blended diet. Pain in the butt sometimes with clogging and getting the consistency just right and sometimes we are both wearing it, but it is working for him! =)

So if you come across this blog post today, please say a prayer for my little man! Thank you so very much....

back to the nissen...again....and again....and again...

Went to Gville today to meet heart surgeon and discuss surgery plan. He feels it is better to wait until Dr Kays fixes the nissen due to risk of infection. That is the short version. =o/ So, tomorrow I will be contacting K's nurse to get the nissen surgery BACK on the schedule now that Camden is completely recovered from the cold he had. I now have to readjust. I was planing on the PDA surgery first. I'm mentally exhausted today, and I don't admit that much. ;o) Camden has been more on the lazy side for a while now, just not wanting to do what he used to want to do. The Dr said this could be caused from the PDA. I havent been wanting to push him, and Im not going to either. If he wants to be lazy, so be it. PDA caused or not, he is getting the break for now. =) The PDA does need to be fixed soon, especially with his history, but he still thinks it would be better to do GI surgeries after the heart surgery especially when there will be a foreign object placed during the PDA.

I did appreciate the Drs concern about Camden's low HR dips he has at times. He hadn't had any since before the ER trip ( and these low HRs are unrelated to the PDA heart issues is having) but he did drop significantly low  again the other night again.  He gave me a little card monitor and as soon as his HR drops, I can lay it on his chest and record it, then call it in to be recorded. So at least we can try to address those issues while we are waiting on the nissen repair.

He continues to do well tolerating tube feeds so was definitely was a soy intolerance! It has been wonderful to not watch him retch! He is actually tolerating 8 ounces, every 3 hours as of today was is HUGE for Camden. He has never been able to tolerate more than 5. He also gained and is almost 29 pounds so my protein/calorie packed blended diet is working. =)

On the other hand, the oral eating/choking has been AWFUL. Something was seriously lodged in his nissen to the point that nothing was going down. He cried and begged for food and for a few days and I had to say no to everything. Every time I would give in, he would immediately choke and it would all come back up. This is nothing new, but some days are worse than others. Today he got a few animal crackers down, so maybe things have shifted, but I was too scared to try. This is why we are redoing nissen. This has been his life for over a year now.

So we are back to the waiting game again. I have been working on not feeling impatient. I cant help the affects of the underlying stress like my hair falling out, or heart palpitations, =oP but I am trying to remember that it is all in His time.....

ER trip

I took Camden into the ER for one thing, and came out with unexpected new information. Not in the plans. Heart problems were never in my thoughts. 


He had another scary low heart rate drop the other night, so the next morning (after watching the pulse ox for the rest of the morning) I took him to Shands with my loyal hospital companion, my mom. =) ( Marcus would come in a minute, but my man works his butt off, has so much to do for our family so unless it is an emergency I tell him to stay in Jax to get his work finished! Love you and I thank u for that, hunny!)  They decided to monitor him, but didnt see anything wrong, which was to be expected. The only time his heart did this CRAZY low dropping (like in the 20s) is when he is in REM, which he never got the chance to do with vital signs taken and beeps going off all through the night.  So he had an EKG, which looked good, and then an ECHO. I waited anxiously for cardiologiest to come around and by 2 she was in our room sharing the latest.


THey found a PDA, which normally is detected/repaired during infancy ......but he will need surgery now.  Here's a brief description for my "unfamiliar with heart problems" people: Patent ductus arteriosus (PDA) is a heart problem that affects some babies soon after birth. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary (PULL-mun-ary) artery.

Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation.

Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns.

In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.

Oh! Guess what?? Im an "unfamiliar with heart problems" person too. I thought I didn't "do" hearts. I have to keep looking back so I can remember what PDA stands for! Camden supposedly had a great heart! Change of plans! I guess not knowing was a good thing looking back, (it wouldve been so much to deal with along with other issues) but on the other hand this should already be fixed. Especially by 3 yrs of age. Thanking God it hasn't done any damage ...that they can see of on the tests. Thanking God that I took him in and now know of this problem, although I felt pretty crazy up there.

The pulmonary hypertension reared his ugly face as well. THat was a word I NEVER wanted to hear again, but before the cardiologist came in, the assistants had came in and told me it was slightly elevated. Ok, normal in CDH, but it was supposedly gone in Camden and wasnt welcomed back. Im assuming the PDA is why it is back. 

So the low heart rates? NOTHING to do with PDA. So, he is wearing a holter monitor to record rhythms tonight while he is his own bed, in a deep sleep, hooked to a pulse ox! I also didn't think I would ever have to worry about him sleeping again.  

Maybe this was all a way to get me to go to hospital and find the PDA. I had no plans on going back to cardiology with the "ok" to do so last year! Im shocked and of course upset over my baby. Camden has enough surgeries to endure and didn't need another one. He has enough to deal with. I am a bit scared. PDA is considered one of the minor heart surgeries but a) if you are touching my baby's heart, that is not minor in my book and b) well, Camden's history says it all. But, this is something that has to be done and we have so much, so very much, to be thankful for. I am focusing on that and feeling very grateful for many healthy qualities of my boy! We will meet with the surgeon to discuss details in the next few weeks.

As for the nissen repair....that is now second on the "surgery list", although he just ate a pickle and a piece of ham and didn't choke. If the nissen unraveled itself, that would be nice. That would be WONDERFUL.

As for the retching over every tube feed...we are thinking it may be a soy intolerance. (he has milk allergy and has been on soy) I tested this out today with diluted juice and he did NOT retch. I should have know better and remembered that he could do this with soy, but honestly, I completely forgot being so focused on the mechanical things.  I almost didn't want to type this part out because I know things change like the wind with his eating issues, but that is what it is today. I would love it to be a soy intolerance!! 

He is getting over the sickness and is just left with a wet cough and on the mend. 

He wasnt happy going to the hospital but it was a good time for him to learn trust because I promised him there would be no hurts and of course there wasn't.  By noon today he was happy in the bed, making it go up and down, up and down, watching Yo Gabba Gabba, and demanding his Nana to do things. He thought he was a king. He also just told me he want to go to Wild Adventures and ride the dragons. He is walking around holding his heart monitor so it doesn't drag the ground. He is ok! =0)

Back to Cardio

Im not going to write out all my worries and concerns, but here is what has happened. Camden is only hooked to pulse ox while he is sick so I can monitor O2 sats to know when he is in need of O2. The other night the alarm went off and his heart rate dropped into the 20s before I nudged him to wake and his HR went up again. He was on oxygen, and sats did not go down, but scared me to death. Last night (well this morning around 340) I monitored him again, and it happened again. This time his sats were going down (he wasnt on O2) and before I woke him his O2 sats were 93 and his HR was 23. After I nudged him he was back to normal. Bottom line a HR in the 20s isn't right and we have an appointment Thursday morning. His heart has always been good and actually on the faster side, so this has caught me off guard. Also, I dont know how long this has been going on because he hasn't used an apnea monitor for mths now and of course I usually just do spot checks with the pulse ox machine.

I called Dr Ks office today to get some more tests ran before rescheduling the nissen surgery, but the cardio is first on my list now. Amazing how greatly your priorities change overnight.

On the mend

....is what Im thinking. He has had fever since Wed night, then last night the fever continued, his sats dropped, I put him on O2, and I rode over to our teeny tiny hospital and asked for an xray. We were out of there in no time, and they didnt find anything wrong with xray. ok, good...?

A few hrs ago the fever stopped, and sats started to go up so as of now he is off O2 and doing well. I will watch him through the night and if he drops again or starts with the fever I will be heading to Gainesville, but I think he is getting better.

So, this is what stinks about CDH. I can accept the fact that he needs O2 when he gets sick. He had severe respiratory distress, ect.... ect, but when a CDH child reherniates, (organs get thru the diaphragm up in to chest cavity again)  there are so many symptoms they may have or may NOT  have. Fever is one. It may JUST be fever. Or retching, (or throwing up for kids that can) tummy pain, constipation, on and on. Camden is also retching again.... Daily. =-/ Has been for weeks. We are still on a slow rate on feeding pump, and we are having to go slower and slower. So, is the retching again another "new normal" for him as well? He was doing so good?! Once again, I can accept these things, but not knowing when it could be reherniation or infection in the lungs is why we head to the hospital each time. ALSO there have been MANY parents that have shared with me that their child's reherniation was NOT seen on an xray. Also, Camden was missing most of his diaphragm, so his chances of reherniating are a little higher. So, this is why Im always feeling confused with this little stinker.

sick and surgery cancelled

So much for getting this over with, but Camden has had a continuos fever since Wednesday around midnight. So, surgery off and we will reschedule or I may do another upper GI and some xrays to see how things are looking now. Im full of mixed emotions, as usual. He managed to eat part of a pickle the other night which is normally never able to happen. This doesn't mean his nissen isnt still too tight, just makes me wonder and keeps me confused. He still is retching sometimes during tube feeds (he isnt able to throw up with nissen) over a small amount of volume. We are back to the feeding pump all the time, so I am able to monitor volume and rate. So the retching is bothering me. It's normal for him to retch when he gets full too fast, but not this bad. He has always been able to tolerate 5 ounces at a time, now gets sick over 2, and this is the reason we are back on the pump with a slower rate. So the retching is something that has started up again NOT related to the nissen, reason that I want to check things out again.

For those who were wondering what this surgery was for: The Nissen (there are a few types, but I'll just try to give the basic understanding as best as I can) is where the surgeon takes some of the upper part of stomach and wraps it around the bottom of esophagus to protect esophagus (kind of forming a flap?) from severe reflux, OR to protect lungs from aspiration. With Camden having severe respiratory distress as a baby plus severe reflux he definately needed one. He had the first nissen wrap done at 9 weeks old along with his trach and gtube surgery. Then he reherniated at 9 mths old (colon was growing through his artificial diaphragm.) and his nissen happen to unravel at the same time, so it was redone at that time his diaphragm was fixed. Camden never ate anything by mouth and then when he was around 2 he started to experiment with food and that is when I noticed something wasnt right. Bottom line this nissen is too TIGHT causing food to get stuck in it. Camden is then stuck trying to get it out of his esophagus which is awful to watch, especially when he doesnt have the ability to throw up. In this past year the surgeon has tried to stretch the nissen through endocopy twice now (to avoid him being cut open for the 4th time) which has helped a little, but it has been over a year and we haven't accomplished much. The concerns were reintubating him for each stretching and not knowing if the stretching would actually even get the job done. So, I have put of redoing the nissen until today......which has been cancelled due to the fever. =/ I still do not know what is going on inside his little body, but I thought if we fixed the nissen, (or tried, there is no promises with all Camden's scar tissue) at least that part would be accomplished.

I skipped details, but I hope the above explained it well enough. =)

Camden wants to eat sometimes. For this to happen, we have to try to get things working if possible. This surgery has taken forever to get on the schedule for different reasons. Maybe God has other plans, I dont know,  so we just wait for His guidance. Im the mean, time Camden is over all doing so well and I am beyond thankful.

Surgery is set.

May 25th. I still dont have complete peace about it, but I know I will. He is choking off and on, about every other day. I have to come to realize that this is effecting his future in eating and that this nissen needs to be redone. That's all for today, Camden wants to go in the pool! =o)