Tuesday, July 24, 2012


...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.

Thursday, July 19, 2012

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....