Tuesday, April 17, 2012
After seeing Dr Kays today we finally decided that the nissen needs to be redone. This was going to happen this time last year and the day before surgery, Dr k and I both felt it should wait. Now it comes down to this: We leave things as is and he is gtube fed and continues to choke when he DOES eat ( all along his aversions getting worse because he is tired of the choking..) OR we do another nissen stretching (dilation) which hasn't really helped in the past, we will never know when and if it WILL do the trick, and it always ends up tightening again....which also means MORE intubations, and MORE anesthesia. OR Dr Kays goes in and does the nissen over.
I am sick about this. I knew he would eventually have another major surgery, but it is here and I am sick. Sick that his poor little belly will be cut opened for the third time. Sick that he will be going under again...( sick that I have lost count on how many times he has went under)
Camden wants to eat so badly sometimes, so this is the only thing that will help if all goes well. So this is what needs to be done, right? Then there are all the risks that Dr Kays shared with me today. Nerve damage, coming out the same or worse after surgery. Like I said, Im sick about this having to be done.
Im already wondering if I'll back out again. It's been a year with no progress whatsoever, and I told myself that if a certain time went by, we'd think about the nissen surgery. I keep avoiding it. I really need wisdom, and that is what Im praying for. I need peace about this.
And then there is the retching problem happening again on top of it all. Is this just going to be Camden's life? I can deal with having to give him gtube feeds and being back on the feeding pump, but I need to know that I tried everything. I want to do everything I can for him. I want all the answers to every little issue he has, and I cant get them. But I want to try my hardest to find out every answer I can.
I feel like we've been at a stop for so long. He has come SO VERY far...getting better and better and growing faster and faster. Started breathing on his own, decannulated, off oxygen, started talking. Then he hit 2 and the eating became the "main" issue. 3 years ago eating wasn't even in our vocabulary. We were just trying to keep him alive. (So while Im so upset over things Im so thankful that we are here!) But it IS his big issue now and he isn't getting better. I am so up and down with it. I'm so used to a gtube to where I think it is normal at times. The only thing that reminds me of how bad things are is when he is choking because food is stuck in his esophagus. It is heartbreaking to watch him and this reminds me that we need to try and fix things. We are still on the CDH roller coaster and I feel like we arent getting off. No, Im not losing faith. I'm realizing it is what it is and my faith is what gets me through. I have my miracle. Just him being here is ALL I ever wanted in this journey since he was born. I have that. I still pray for healing for him, and over all Camden is doing much better than I thought, but besides a miraculous re- arranging of body parts, past surgery fixing, spleen growing, etc etc etc he is going to have some problems through his life. And I am thankful for our Drs that can help with many of those problems.
Yes, Im all over the place and am trying accept this surgery. I have plenty of time to let it sink in and I know that God will give me that peace. OR, maybe that nissen will finally decide to bust a stitch and work the way it needs to for my boy!! I'll take that too. ;o)
On another note....Camden finally gained weight! Im not sure how because I havent changed his feeds LOL but I guess the little height he grew helped add some weight. He was 27 pounds today. =)