Brett had a good clinic visit last week on December 8th. I had taken him in on December 1st because I was concerned that he was losing weight again. He had lost weight - he was 9.025, down from 9.8 when left the hospital last. (They immediately ordered him to have IV lipids - more on that in next post). On December 8th's clinic visit, he weighed 9.27, and that meant he had gained an average of 36 grams per day since December 1st! That is remarkable growth for Brett. He still has a hard time absorbing the fats from his diet, as will probably always be the case. Our biggest obstacles are being diligent in feeding him the enzyme pills every 3 hours, which he has come to often spit back in our faces, and keeping his feed on for 20-22 hours a day. The pump in the backpack thing is great compared to having to be hooked up to an IV pole all the time, but it doesn't always work so well in reality. It gets pretty frustrating and sometimes we fail to hook it back up to him because we're just so tired of it beeping and getting stuck and having to take it off and prime it again, etc. etc. But we're trying.
On this visit, all in the same room Brett saw his pulmonologist, gastroenterologist, dietician, nurse, and surgery nurse. His pulmonologist thought his lungs sounded like a different child altogether! He thinks we are really getting Brett on the right track. Brett is doing really well with the lungs right now, and it seems as if our discipline in doing treatments is paying off. However, we are so very aware that with Brett, he could still be back needing a hospitalization next week - we just stay thankful for each day of good health.
Brett's next scheduled appointments are December 14th, December 17th, and January 5th.
Yay for a great report on his lungs!!! And we'll be praying that he starts gaining weight again!
ReplyDeleteGreat to hear he is starting out this cold and flu season with a good set of lungs.
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