January 4, 2011

Ugh ...

Well, since school started again, he's been eating a small amount during lunch. At least there is some food going in. And for the past few nights, he's been eating a "normal" dinner. Please note though, that a normal dinner for him is baby sized. Some days it could be several slices of pizza, and other days, literally 4 or 5 bites of food. Thus the need for bolus feedings. I've worked him up to 3/4 of a can in the morning, and 1/2 a can in the afternoon right after school.

In November, when he was having all that congestion that would not go away, the doctor had prescribed Hypertonic saline and Flovent (an inhaler steriod). It cleared his congestion up within a week. I always wondered which medication fixed it, or if it was both of them. Well, it was the Flovent for sure. I know that because I goofed up. The prescription was supposed to be 1 puff, twice a day. Since it wasn't written down somewhere where I could re-read it, I thought it was 2 puffs, twice a day. There were no harmful effects from the double dose, but ... when I called the pharmacy to refill it, it was a month too early. That one inhaler is supposed to last 60 days, not 30. Terrific, right? Since his Flovent ran out, his cough has returned with a vengeance. I think it's the cold, dry air that might be triggering his cough, because when we go outdoors to exercise, he coughs so badly, he can barely even talk.

The doctors seem to have samples of everything else except for Flovent. I can't reorder until next week, so we have been hanging on, thanks to my mistake. We've been doing so much Albuterol in this house, even the cat has wide, open lungs.

We are TRYING to do some jogging everyday to keep his lungs healthy. I've been reading some studies that say that CF people who do aerobic exercises regularly have higher FEV1 results, and lower rate of mortality.