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.
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.
Devon-
ReplyDeleteI am sure you must be feeling lots of things right now. But I know one of the reasons I picked Dr. Kays is that he is a master of timing (I think he has a sixth sense for CDH kids), so I am sure it is the right thing to give Camden more time to see if it works out on its own. I so hope that he can eat and it stays down!!! Many, many prayers!!!!!!
Hugs,
Jennifer
Hi Devon,
ReplyDeleteLong time no post from me. How are you? You are an amazing mommy. Happy Belated Mother's Day!!!! I love your posts and thanks so much for showing us that faith is difficult but totally worth it and miracles do happen. So glad to see Camden eating. Knew it would come. Everything is progressing just like God wants it. Go Camden. Hope to see y'all soon.