New Record!

73 days! New record for days out of the hospital! The last record was 58 days, and it seems as if he's still going strong. He's doing so well, in fact, that the new record sort of snuck up on me. Very thankful, though!

 It was a beautiful day on the Hill!

Wednesday March 23 I took Brett to clinic for a routine scheduled visit with his nutritionist, pulmonologist, and gastroenterologist. It was a good visit - although he didn't gain any weight, at least he didn't lose, and that's a small victory in and of itself.

We talked about adding more salt to his diet now that the weather is warmer and he will be sweating more. The GI doc increased his Prilosec dose in hopes of making him feel better in his tummy and maybe eat more. She also prescribed a substance called a "binder" that is supposed to help his stool not burn his bottom so bad. It was complicated the way she described it - as well as gross - so I'll leave it at that. She took a culture on his bottom to test it for strep. Also his stool will be tested again for c. diff., even though there's no real reason to suspect he has that again. I guess since he's had c. diff once now, they will test almost every time for that in order to catch it and treat it before it begins causing him to lose weight. His last culture was negative.

No changes on his feed - still tube fed for 20 hours a day, while eating and drinking whatever he can on top of that. Still over 2000 calories a day for our little guy and no weight gain. Frustrating.

The good news is that he is healthy right now, with no lung infection. He is not scheduled to go back for four weeks - yay, with a weight check in 2 weeks on infusion day, April 8. 

The beautiful daytime weather turned into a hailstorm that evening!

Brett's pulmonologist decreased his Flovent dose from 110 mcg to 44 mcg. (This is the dose Mark takes for managing his mild asthma). Oh and he started on Zyrtec this week to hopefully help with his eczema that is under control only when I use the heavy steroid ointment. His eyes are all eczema-looking, so maybe it's allergies. Nobody really knows, but it's not a bad idea since the pollen season is again upon us.

No changes on his feed - still tube fed for 20 hours a day, while eating and drinking whatever he can on top of that. Still over 2000 calories a day for our little guy and no weight gain. Frustrating.

The good news is that he is healthy right now, with no lung infection. He is not scheduled to go back for four weeks - yay, with a weight check in 2 weeks on infusion day, April 8.