Sunday, December 07, 2008

Home From the Hospital

Last Thursday Callum came home from what amounted to a 5-week stay in the Johns Hopkins Pediatric ICU. Well, it was really a two-week stay to treat bacterial pneumonia, with a day or so in intermediate care, four days at home with us thinking he was out of the woods, and then a rude awakening followed by a two-and-a-half week stay back in the PICU to treat respiratory complications associated with a virus they never did quite diagnose. He's come through it amazingly well, all things considered. More assertive than ever in some ways, yet also with some new insecurities. Maybe having to sleep in the overlit PICU, and experience some time without either of us at his side has made it hard for him to re-acclimate to sleeping in the dark in his own room, because at bedtime he's more clingy than he's ever been before. But though we worried (along with a million other things) about how he might suffer from all that time without his regular physical therapy, he doesn't seem to have lost any ground physically. His hamstrings are tighter, and maybe, just maybe, his right hand has a little weaker grip than it did before. But it's hard to gauge these things.
I think this time really clobbered Janet and me more than any other time Cal's had to go to the hospital - having done this enough to have expectations (believing there might be a "typical" arc of recovery for him ended up being a big set-up), enduring a 2-week stay, thinking he was in the clear, and then having to go straight back in with things actually seeming worse. In his other hospitalizations, I don't remember ever feeling - at least not as viscerally - that he might not actually make it through. We have a lot of love and gratitude for the good people in the nursing and respiratory teams at the Hopkins PICU. One of the few joys of this experience was to see Callum get better day by day and watch his personality re-emerge and turn into a full-on charm attack.
We owe so much to Toni Holter and Heller Kreshtool - their support has been incredible through this, as Toni sat with Cal so many mornings in the hospital, enabling us to deal with the rest of our responsibilities to at least some extent, and Heller looked after our dog Doc, visited with Cal, and offered us a place (via tupperware in the end) at her Thanksgiving table. Words are inadequate for what it means to feel like someone "has our backs" at a time like this.
He's come home with some new gear in the form of a bi-pap machine he's supposed to wear overnight, and the experience has also forced us to drag out the pulse-oximeter again, also for overnights. It has a sensor which attaches to his big toe to monitor blood-oxygen level, and it alarms when the number goes below a certain level. We are trying to reset our natural anxious proclivities because this thing inevitably alarms under totally normal circumstances when he's asleep - everyone's blood-oxygen level fluctuates throughout the night. I can feel what's left of my hair going grey.
So, back-to-back respiratory infections knocked out Halloween (a major disappointment - we were gearing up for it in a big way for the first time in a long time and Cal was totally on board - he even has a gorilla costume which he never got to wear, but will hopefully work out for him next year) and Thanksgiving (never been one of my favorites anyway), but we've got our fingers crossed for Christmas.