We may be moving out of the step-down room today if there's room on the floor, which will mean (hopefully) a bigger room and less activity. If it's not today, it'll be whenever there's room. Maren and I are doing okay too, we're back to our system of alternating days staying at the hospital. As great as the care is in the PICU, it gets very tiring having to wait to get in to see her and to be kicked out when other things are going on nearby. Now that we can stay with her and one of us is always with her it's much less stressful for Maren and I.
Lyra continues to improve, her demeanor is much better today, more curious looks and smiles, less overall grumpiness, but still pretty sleepy. We think she's starting to tolerate the continual feeding she's been getting over this last week. They're also working on weaning her off the medication, and she's doing well with that too.
The current plan is to keep giving her the continual feedings (breast milk fortified with formula) for another week or so and then they'll move her back to breast feeding and if she's okay with that, then they'll let us go home. We won't be home for too long though. The surgical team is planning on getting the second stage surgery done in about 4 weeks from now, so we may only be home for a couple of weeks before having to come back to the hospital. From all reports, the second stage doesn't have the prolonged recovery period as the first does.
Getting past the second stage, the Glenn procedure, is a big milestone and Lyra's physiology will be more like a normal baby's afterwards. Once complete, it could be a year or 18 months before the last surgery is needed.
Posted by Tim at August 13, 2004 03:10 PM