I am not angry. Just thought some of you may have been wondering what the heck we've been doing since we warned about the approaching storm in the last post.
We made it through Hurricane Sandy unscathed. We lost power for about 24 hours but were able to keep Zachary's emergency backup batteries charged by plugging them into the charger in the van, though that required quite a bit of driving around. It got cold in the house (59 degrees) but the power came back on shortly before we were ready to abandon ship.
A lot has happened since then.
Probably the biggest news is that Zachary had what we think was a successful sleep study. We don't have the official results back yet but he went all night without oxygen or needing to be put on the vent, so those are really good signs. His carbon dioxide got a little high but not so much so that he needed to be vented. This means we may soon be able to start weaning him from the vent when he's sleeping, which is another prerequisite to getting rid of the trach.
We've also started weaning him from his bottles of formula, which means starving him until he's so hungry he'll eat stuff like yogurt and baby food and rice cereal. We've made some progress, though not as much or as fast as we'd like. And he's lost some weight, dropping below 20 pounds again. But we're seeing a dietitian at Georgetown University Hospital who seems supportive of our desire to get him eating real food. It's real tough on the days he's cranky, crying, and signing for his bottle, but we've held firm so far.
He's had a bunch of other doctor's appointments too in last month. He's seen the pediatrician multiple times, the pulmonologist, the cardiologist, and the dietitian, not to mention his physical therapist and speech and occupational therapists. All have gone reasonably well. Still getting better, just more slowly than we'd like. But he's headed in the right direction.
And we've entered the dreaded RSV season, the time of year when kids get this respiratory infection that really puts those with chronic lung disease like Zachary into a tailspin. The doctors have told us to put him on lockdown and avoid other children or enclosed places where it could be transmitted.
We're haggling with the insurance company, Medicaid, and the pediatrician's office to get him a synthetic vaccine called Synagis that's supposed to help, but the health care and insurance bureaucracies are beating our butts right now. He's technically outside the guidelines for getting this very costly series of shots (one per month from October to March) but all the doctors seem to think he needs it. We're going to prevail eventually, though hopefully before he gets RSV.
Mom and dad are TIRED. The nursing hasn't gotten any better. But I think we've gotten better at dealing with the disappointment of unmet expectations. We could use a break though. We each stay up two nights a week to cover unfilled shifts. I am surprised at how efficient one can become on an hour or two of sleep per night, though it is no way to live, and as one of my friends says, is unsustainable. That's for sure. But it's better than the alternative, sadly.
Hope to start posting more regularly again. Thanks for checking in on us!
