Happy to be Home

Lynnea was released from the hospital yesterday evening; I apologize for not posting last night with this news, but things were kind of busy around here. She is doing well, and seems to be happy to be at home (even though I don't think that she realizes that this is home). Her lifetime totals are now: 123 hospital days, 34 at home days. We're hoping to make up some ground in the at home days category this time, but yesterday Dr. Kochilas seemed to think that she would probably need her next heart surgery in 6-8 weeks, if not sooner. The results on the echocardiogram she had done on Friday showed that her heart function had certainly improved from what it had been prior to her most recent surgery (the aortic augmentation) but there is still a spot with some narrowing and/or blockage (they're not completely sure which) that concerns them.

One of the most frustrating things about being discharged this time is the difference between my definition of "manageable" and the doctors definition. What I mean is that, the main reason we spent last week in the hospital was so that they could get her medications and feeding schedule down to something that would be manageable when we got home. Well, this is what her current schedule looks like:
6am -- give meds
7 am -- start a bolus feeding
8am -- meds
10am -- feeding
11am -- meds
1pm -- feeding
2pm -- meds
4pm -- feeding
6pm -- meds
7pm -- feeding
8pm -- meds
10pm -- start her overnight drip feeding
11pm -- meds
2am -- meds, and refill feeding bag
3am -- change very wet diaper because 2am med was a diuretic
6am -- meds & stop drip feeding

Ummm. . . yeah, that's not exactly what I call user-friendly, especially considering that most of her medications are either once a day, or twice a day -- every 12 hours, and there is absolutely no reason why most of them can't be given together, so if the doctors had communicated better (and given even an iota of thought to how incredibly ridiculous this schedule is for someone to try to run at home) they could have had her only taking medication 4 times each day. I'm in the process now of adjusting the medication times to get Lynnea on a better schedule, but some of her medications are ones that you really can't just abruptly change the dosing schedule (like Digoxin and Methadone) so this is going to take a few days. In the mean time, I am also in the process of trying to sort through Lynnea's clothes because most of the stuff she was wearing prior to this hospitalization don't fit anymore (imagine that, my baby grew over the past 10 weeks). To make this problem even more difficult, she still doesn't really like to be handled a whole lot, so going through and actually trying a bunch of clothes on her at any one time is completely out of the question. Oh well, no one ever said the transition home would be easy. . . at least we're at home.