I couldn't do a post without a picture of my girlie (who has been AMAZING though all of this testing!)
I met with the GI surgeon today to follow up with all of Brooklyn's tests. Overall there was a lot of great news: Tested negative for Cystic Fibrosis, Celiac Disease, and Lactose intolerance. The Somach Emptying test came back normal. The swallow study showed delayed chewing which we knew but no signs of reflux or aspiration while she was eating and drinking.
The PH Bravo probe did show prolonged reflux at night while she was sleeping - but NO signs of permanent damage due to reflux with the biopsy he did. (we had to have her off of her Prevacid for a week leading up to the test.) There was some debate over having the fundoplication surgery while we are in for the feeding tube placement. Ultimately, we decided AGAINST doing it. Brooklyn's reflux is under control with Prevacid. It is not something we have struggled with. The thought of altering my baby's stomach and esophagus at this point is just not something I can make the decision to do. The surgeon was 100% supportive either way which was nice. I know in the Rett Community the fundo is an area for debate. I have heard families that say it was the right choice for them and others who have said they would never ever choose to do the fundo if they had to make the decision over again.
So.....feeding tube surgery is being scheduled. The GI office will be calling me tomorrow morning with our surgery date. I want to thank all of you who have prayed for me and for Brooklyn over the past two weeks as she underwent SO much testing. It has been an exhausting couple of weeks for sure. Keep the prayers coming - I would like to say that I have no worries about the feeding tube....but that is a big fat lie. It freaks me out. It is just one of those choices I just never wanted to make but here we are, waiting for the call for our surgery date. I know in my heart she needs it and now that I am much more educated on the tube I am at peace with my decision. We plan on her eating by mouth during the day and then getting the extra calories that she needs via the pump at night. It is a win/win.
I will let you know when we have the surgery date.....until then.......
Thursday, July 7, 2011
GI Surgeon Update
Subscribe to:
Post Comments (Atom)
Posts
7 comments:
Hugs and prayers to both of you!!!!
I had feelings of defeat when we first made the decision also, but deep-down I knew it was the right thing to do. I have to be honest -it was hard right after we came home from the hospital. Not physically, but emotionally. I remember cryng and thinking, "I signed up to be a mommy, not a nurse." It just took some adjusting and now, of course, the feeding tube is our "normal." By the way, we chose not to do the fundo either. Haven't regretted it yet.
Sounds like things are going well, thinking of you daily with all of your concerns. Glad everyone is doing well and it appears that Brookie is really being a trooper. Good for her, but we all knew she would be. Everyone should be as strong as she has been. Give her a big hug for me and tell her I miss her.
It looks like everything is going well! I hope the feeding tube surgery goes well! You're in my prayers!!!!!!!!!
-Luzianne
Hug to both of you for all you're enduring right now. Glad for the good news. :) Hope it all goes WELL.
been thinking about you both lots lately, and Boston too! you are such a wonderful mommy. avery and I send our love!
Wish I could make this all go away for both of you....isn't it amazing what love can do? You are in our thoughts and prayers. BTW: One of our friends has a feeding tube. Her parents had a really hard time deciding to do it, but afterwards said they would have done it much sooner if they could do it over again. It's wonderful to have it as an option. Hugs from your MN friends!
Lois and karly
Post a Comment