Day +27: 11.1

Zoe’s WBC counts were at 11.1 today, which is significant for two reasons. One, she has white cells! Reason enough to cheer around here. And two, she is off of her cell growth medication, also known as GCF, and her count is holding steady. She was at 11.8 yesterday, her highest so far.

It will likely go down tomorrow now that she is off completely, but we’re optimistic it might not. Without the stimulation of the growth factor (nurses here call it miracle grow for babies), it may drop by as much as half. Still, we went one day without a drop, so that’s good news.

Zoe is still having regular spit-ups as she processes out the mucus, but the pain appears to be mostly in the past for now. We expect to be taken off of the PCA that controls her pain with the button press any time, and they are trying to move us toward oral meds slowly in anticipation of discharge.

The music therapist and physical therapist both stopped by today, and Zoe did great. She is getting much stronger and closer to being able to sit up on her own in the tripod position, though she is still somewhat unstable, having to spend so much time on her back by necessity. That she is trying is reassuring, as are her attempts to roll over, often thwarted by the tether of tubes dangling from her chest.

I suspect the music therapist cheered me up more than Zoe. He did rousing renditions of Happy and You Know It, Itsy Bitsy, You are My Sunshine and one I really loved but had never heard, called Baby Beluga. Zoe was having a round of coughs and spit, so she was less enthusiastic. Still, by the end she was smiling and waving her hands a bit. Certainly a nice diversion, and I’m grateful they have this sort of thing.

Wandering minstrels with lamb chop sideburns who wear Velvet Underground and Bjork buttons while singing Raffi and classic lullabies are more scarce than they should be, I say.


On a more somber note, one of the kids had to go to the PICU, or Pediatric Intensive Care Unit, last night. She had her transplant a year ago, but was back here for care due to a brain tumor and surgery. It’s been a harsh reminder that things can take a bad turn with such complicated diseases as the kids here are fighting. Hopefully she will be back up here soon and back on track to recovery.

Day +20

Well we appear to be on the right track, Zoe is growing cells pretty rapidly now. Her WBC count was 1.5 today, up .2, and her ANC is now up to 1290.

The downside is that we’re having a lot of pain issues due to the cell growth. We’ve been trying to pre-emt the pain with Tylenol, but that doesn’t always work, and we’ve already weaned her Fentanyl down some since that is part of the process. We don’t want her on the narcotic any longer than absolutely necessary.

Still, it was a rough night for Michelle. I’m taking my shift outside the hospital to get rested. Hopefully this won’t continue, we’re told it can run as long as a week but we think that her “week” started days ago, so we might be almost through it.

Having a baby in pain really does make one heartsick, but the nurses keep reminding us that it’s better for her to be young, the influence on her will be minimal that way. They’re well intended, but those sentiments don’t really make us feel better.

Getting through this will, however. Almost there, we hope.

Day +11: Happy Fourth!

Zoe is doing well today, much improved from yesterday I would say. She is sleeping the day away, and that’s probably for the best. Whenever she is awake she has a hard time getting comfortable, and she has a hard time being held for very long, so it’s not easy to console her.

No uptick in her WBC counts today, sad to say. Everyone here is confident she’s begun engraftment, however. She’s still flushing regularly, skin very warm to the touch at times, and her temperature is staying around 99.5.

We did up her pain medication late last night after having a hard time getting her settled. She is set up on a PCA machine to automatically dose the medication, with “bumps” of it for rough patches if needed via a button. Zoe doesn’t react well to the button, however, she gets very itchy at the sudden higher dosage, then it fades and she is in pain again, so we tend to increase the drip instead. It’s a smaller amount than the button, but it keeps her more at ease when it’s consistent.

Still Cheeky

Zoe’s creatinine came back 0.1, which is suspiciously low given yesterday’s 0.6. Dr. S felt it unlikely that’s accurate, but it does seem likely that it has gone down not up, so we’re ok there. She continues to respond really well to the Lasix, so her weight is stable.

Which is all a long way of saying we’re holding steady. All is well, she’s doing what she’s supposed to — growing a new immune system.

Have a great holiday!