January
2008
Home0
Being home has been new and crazy.
It may seem like you’re doing a lot of the care for your child in the hospital, but… it’s not the same. Not by a long shot.
I feel fortunate that we were able to spend 4 days (and nights) in the Koala Suite at the hospital before we left, taking care of Dorrie and doing everything for her ourselves. It gave us a good feel for what we were in for, gave us practice at all of the parts of her care that we hadn’t really been doing, and generally left us with a far more realistic idea of how we would be able to handle this.
[I'm writing this here in the living room while Dorrie is asleep and OH MY GOD her sat probe SUCKS tonight. It has been constantly alarming or getting no reading at all when clearly she has a pulse and is breathing fine.]
Home is yet again different from the Koala Suite, but in a good way, aside from the lack of housekeeping service. We’re waiting to see how the routine falls out; for the time being we’re more or less sticking to the ICN’s every 3 hours schedule and trying to get her sleep times to be a little more predictable. We’ve been out twice in the car — once to the pediatrician and once to the ICN’s outpatient clinic in Manchester — with only one notable choking episode. I think the next week will hopefully see us getting a bit less frazzled with all that there is to do, and maybe we can actually start sleeping at the same time again.