Brett's Clinic Visit & Swallow Study

Gantt and Brett turned 14 months old today!

Brett's check-up at UNC last Wednesday went very well. We saw his surgeon, did a swallow study (x-rays of how the food goes down his throat), and discussed various details about his treatment with his pulmonologist. The main points are as follows:

1. that he is now finished with his IV antibiotics we've been doing for 3 weeks. We're soooooooo glad

2. his swallow study was completed and he has no structural problems in his mouth to inhibit the proper eating process. He just needs feeding/speech therapy and practice to learn to use his mouth and tongue effectively.

3. basically, is surgeon is not comfortable putting in a port until he a bit older and bigger. It is a gray area, there is no real black or white. If it were a situation involving a specific need for a port, he probably would, but it is only a desire. After discussing it for a little while we decided together that we would remove the Broviac central catheter and not replace it with anything right now. This is an outpatient surgical procedure (usually) that is scheduled for tomorrow, June 3. This will be his 3rd Broviac removal and he has not had a problem before. The last time was in December of 2009 and he was able to come home that day. He has been under anesthesia many times and tolerated it fine, but there is always a risk. Please pray that everything goes well as it is expected to and it will indeed be an outpatient procedure.

4. We have been tapering the steroids for a few weeks now. He has not been on any oxygen since the weekend of May 9. So hooray that they have been working for Brett. We ended up doing 6 weeks at the high dose, 3 weeks at the medium dose, then 4 weeks at the low dose. We still have 2 more weeks to go before we will discontinue the steroids. Since the steroids have complicated things, we still aren't sure the extent of his immune deficiency, so for now still no live virus shots. Gantt will probably be able to get his next month, but we will still hold off on Brett until we have more complete information about what is going on in his cells.

5. As far as the swallow study goes, he did not enjoy it! We mixed the barium with his applesauce and fed it to him. He aspirated on the first bite, but not at all after that. Even with the thin liquid he cried with his mouth full of it until he finally took a breath and swallowed, but didn't gag. Part of me wishes that he would've gagged a lot, because I feel like they didn't necessarily get a good picture of what sometimes happened. I am going to ask about this because I wonder if we really got all the information we needed or could've gotten that might help us to treat him better.

Well, you're all caught up now! I'll text updates to this blog and to Facebook as we go tomorrow. As always, thank you for being interested enough and caring enough to keep up with our family.