Counts are holding up still despite the cessation of the growth factor, her WBC was 7.3 today. Down from 11.1, but not nearly as much as we were told would be likely. We’re encouraged.
Things are a little tense at the moment in general, nerves frayed. Michelle has been out of the hospital a few days now, and though we’d hoped to get her back in before the weekend, she’s had a cold so we can’t chance it. We think she picked up the cold on the unit actually, someone came onto 5200 with a cold and now most of the unit (13/15 beds) is on isolation, meaning no activities, no leaving the rooms except to leave the unit.
It’s a very isolated place already, so being on drop isolation raises the tension for everyone. Nurses have more duties as they have to deliver bedding, towels — anything we need really since we can’t leave — as well as wear new gowns and masks for each room they enter.
Zoe has not shown many signs of having the virus yet, but she has been sneezing here and there so we’re concerned. We’ll have the rush results back this afternoon, but will not be able to rule out an infection until next week at least. The nurses call it Paraflu, and relate it to the common cold, since that’s how it affects adults for the most part. It can be much worse for immuno-compromised kids of course, which means pretty much everyone here. They take any infection very seriously.
Still, the doctors feel this will not slow her discharge, even if she ends up getting a little worse, so long as it’s not in the chest. The way it was put to me was, she will need to begin handling her normal childhood colds and infections soon, and as long as it is not serious she should be ok after it runs it’s course. Nevertheless, it’s scary.
For my part I’ve been wearing a mask whenever interacting with her for the past 24hrs just to be sure I don’t give her anything, since until today I’ve been roaming the unit doing my own housekeeping and that’s how Michelle picked it up.
So, between isolation here and no relief with Michelle sick, everyone is edgier than we otherwise would be. We’re nervous about discharge, we want Zoe to be in perfect health for that and that is looking iffy. We’re nervous about being on our own managing meds again, and we’re waiting for the other shoe to drop each day. Things have gone really well for Zoe so far, her painful episodes were all expected and “routine”, so we are anxious that something could happen at any time.
Zoe though…well she is a perfect baby. Everyone believes that of their own baby of course, but it still needs to be said. She has little coughing fits, spits out green or yellow goo, then goes back to playing. It’s astounding. She doesn’t cry unless in pain, is patient and calm, and sleeps really well. I don’t know what we did to deserve her.
Oh, it sure sounds like a rough few days. A bone marrow transplant unit is isolating enough, and the way you describe the additional precautions sounds awful. I would be nervous, too, about all the things you describe. Her immune system will be tested time and time again in the unit and in the everyday world, and even though I know she and you and Michelle are up to the challenge, I certainly get the tense and scary part.
I think she is remarkably courageous to bear all of this with such patience, calm, and good humor. This is the first time in my long life that I have ever had a 6 month old baby as a role model – it would be a blessing if I could meet my life challenges with such grace and equanimity. Namaste, Zoe.
Zoe sounds like such an amazing little girl… all the things she is going through and still holding strong. You and Michelle are to be admired as well, to have the strength to keep fighting no matter what it thrown in your way… good luck and hope you get downgraded in isolation soon!
What Mara and Tiffany said! I couldn’t have said it better.