August 29

Another mixed day today. Will did great for the 2 PM feeding, nursed well then took the rest by bottle. At 5 he was more sleepy, wouldn't wake up completely. He took about 1/3 of his bottle and had the rest gavaged. He had a strange dirty diaper that didn't look like what he usually makes and was a bit fussy, not as bad as he was before the Mylicon but more fussy than he had been. We think it may be because the nurse forgot to give his Mylicon at the 2 feeding. He's gaining weight very well, up to 5 lb 14 oz today! We're also stopping his caffiene, which he's been on for weeks to treat primary apnea. There are 2 types of apnea, primary is where the body forgets to breathe or the signal is lost somewhere, the other type they call something like obstructive apnea and happens when he's eating and holds milk in the back of his throat instead of swallowing it or when he's having reflux. He still has obstructive apnea but they don't mind that since he usually resolves it on his own or it happens during interaction due to something we're doing so we know. He hasn't had any primary apnea since the 18th, so hopefully after stopping the caffiene he won't have any. He needs to be off of it 7 days before he can come home, it takes a while to get out of the body. If he has apnea again the 5 day apnea free countdown starts over. He'll be getting a hearing test and vaccinations in the next week.

Now we've been there 8 weeks and are talking about discharge we're finally getting a lot of information that would have been useful from the start. I got some pamphlets on his long-term care and medical needs, discharge requirements and got to borrow a book which details all the health problems he's had along with a lot more that he hasn't. We're having a "care conference" tomorrow to meet with all his caregivers, discuss his treatment and plans for discharge. I'll have a chance to ask any questions I have, make suggestions and generally get information. So if anyone can think of good questions to ask feel free to suggest them before Wednesday noon pacific.