It has been so long since we've posted anything, and am not sure if anyone still checks in. If so, we recently got some answers about Gabe's eating.
He had a swallow evaluation done where he drinks barium and they take xrays to see what he is doing with the food and if he swallows properly. We found out that he has a severly delayed swallow which leaves his trachea wide open to accidently breathe in food. He could control the formula better when it was a necture consistency and a cold temperature woke up his mouth so he would eat a tad better. The reason he has a delayed swallow is because the nerves that trigger the swallow were either damaged from the respirator or burned from his acid reflux. These nerves are not things that will heal. As Gabe gets older, he'll learn to adapt to this condition. What we learned may not keep him from a G-tube (feeding tube going through the abdomen into stomach), but at least we have some understanding about the "whys."
He was recommended for a G-tube recently. We still need to have a consult with our Gastroenterologist about this. They are recommending a surgery for the reflux where they wrap part of the stomach around the place the esophagus meets the stomach to reduce/elimnate the reflux. Our concern with the surgery is we have heard from many sources (doctors included) that there frequently are very serious side effects and complications as a result from the surgery. I have been having trouble sleeping thinking about this and our options, if we really have any other options. We should know a lot more after our consult the beginning of March.
Gabe also has another surgery that will be performed after he gets off oxygen. We are assuming another 2 months on the O2.
He is gradually getting weaned off of medications, which is so exciting to see some progress. He is only on 2 precriptions now!
Gabe is definitely growing and developing in other areas. This past week he has discovered his voice and new noises he can make. At first it was cute, but that's wearing off ;)
We have been very blessed so far during the cold and flu season that he hasn't been sick. He has enough things on his plate, that he really doesn't need that to deal with also.
Thank you for checking faithfully. We are blessed to have people like you praying for our little man.
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Thanks for the update, Shannon. Hearing the details helps us to know what to be praying for. We'll also pray for you to be able to sleep... You two are such awesome parents, and you know how crazy we are about little Gabe who isn't so little any more. Lov ya
ReplyDeleteGlad to hear you're getting some answers, even though it sounds like it's hard to hear and know what to do next. We'll definitely be praying for you all.
ReplyDeleteCedar
We love you!! And are looking forward to meeting this little man in person one of these days...thanks for keeping us posted!
ReplyDeleteDan & Shannon,
ReplyDeleteI am so happy for the update and glad to hear of Gabe's progress. I am excited for you guys that you are finally getting answers to your questions. Gabe is an awesome little guy and we all know he can over come ANYTHING!! You will always be in our prayers. Keep up the great work, Gabe couldn't ask for better parents. Hank wants to come play soon!!! Love you guys.
Steph
This is a lot of information to take in I'm sure! Hoping that you enjoy having Larry and Suzy and Matt around this weekend (if they ever make it there) and throughly bummed I could not be there... Sometimes I hate having to work. Anyway, love you guys and hoping to see you sometime soon!
ReplyDeleteHilary
Mrs. Rittgers, Jackson reminded today that I had checked in on you guys and I am glad he did. Thank you for the update. We will pray for Gabe, you and Dan. I will be praying for sleep too. I hope that you get more answers you are looking for and things continue down a path that is healthy and productive. Blessings to you all. He sure s cute little thing!
ReplyDelete