On Monday, we saw the GI doctor. She is overall not as impressed with the feeding tube as she would like to be. She does not think the extra hydration going through the tube is quite enough to help the little guy. So, she has ordered scopes and a colonic manometry to be done. He will be admitted to Children's for 3 days for this testing. The endoscopy and colonoscopy will allow her to see inflammation, etc on the inside, and she will also be able to take biopsies to check for certain food intolerances and other conditions. During the colonoscopy, the doctor will place a colon catheter for the manometry. The manometry will show us how his colon moves and can help us see if there is a certain part of his colon that doesn't move. For the monometry, he will have to lay in his hospital bed for 6 hours. He is not under general anesthesia for this, so this should be interesting.
If his monometry is normal, the doctor thinks something called a cecostomy would be a good possibility for him. A cecostomy would be a little button placed at his cecum so that we could access his colon that way to flush him out. Basically, it is a way to give him an enema from the top down rather than from the bottom up and back down.
We are waiting on the hospital to call to schedule the inpatient testing. We will then go from there depending on what the scopes and manometry show.
On Friday, we went to a feeding evaluation at Our Children's House at Baylor in Dallas--referred by the GI. He was assessed by a speech language pathologist, occupational therapist, behavioral psychologist, and nutritionist. They are recommending that Beckett be admitted to Our Children's House for a month in order to get on a feeding plan that his body can tolerate. This came as quite a surprise to me, but they think the intensive individual treatment with medical oversight will benefit him greatly. They want to watch his in's and out's and how his body reacts to the food with a goal of finding high calorie foods that his digestive system can handle. They will also use some behavior modification strategies to change the way meal times work. I cannot exactly picture what it would be like to spend a month in a hospital. But I do know that poeple figure it out all the time.
As you can imagine, this is all a lot to take in and think about it. Just a day at a time right now, and we will see what happens. It is hard not to be anxious- but I know we will be okay. Thank you for praying as we try to figure out what needs to happen next and the best way to handle it for our family.
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