Day +8: Never a Dull Day

Each day seems like a whirlwind here, or at least, a whirlwind as experienced through a dense fog of fatigue. The emotional ups and downs and new medical events prevent it from ever being dull.

Last night was long, Zoe had her first night with the “blow-by” oxygen, which is basically a big tube that blows oxygen past her face to boost her intake. They put it in place because when she was sleeping, her oxygen saturation level would dip down to 80 or 85 out of 100, which is too low for her to continue for any long period of time.

At first I thought it was the machine, it gives very chaotic readings for babies and Zoe is a squirmer, flipping her little legs all over and wiggling, such that the readings are often off. The nurses took a look at the waves this time however, and determined that it was accurate enough that we needed to play it safe. So, we brought out the tube, which lays on the bed near her head and blows a gentle breeze past her face, but makes the room sound like we’re suddenly seated over an airplane engine. It’s about as good for a sound night’s sleep as you’d imagine it is.

Because of the need for oxygen, a whole series of tests were triggered to be sure we have an accurate picture of everything. New blood cultures, preventative antibiotics, a new chest x ray and a new dressing all so far this morning.

Still, Zoe continues to be in great spirits. She still has mucositis, and though the volume of it has gone down there is a little blood spotting it now. She will spit up, get cleaned up, and then go right back to smiling and wiggling or playing with her toys. It’s a really amazing little spirit she has, kids are so resilient. An adult who just spat up what she is each hour would almost certainly be dour and grumpy, I know I would, but here she is ready to play after a few minutes of upset.

We also had a visit from the discharge coordinator, but after a bit of confusion I realized that they check in with everyone well in advance to try and start training and set up class times. We’ll need to know how to do pretty much everything the nurses currently do for us when we leave here. I suggested they check back in with us in a week or so, it’s a little too early for us to manage all of that and not forget something.

Her CBC came back, and we’re back to “<0.1” today, so it could be that the 0.2 was a fluke. Her bum continues to heal, which gives us hope that that is the reason for the WBC count to go down a tick, but it’s really hard to say. It is very early to see any cell growth. The count is especially likely to fluctuate with cord blood transplants, so it could be the start of that we’re seeing.

All in all, we’re right where we should be, perhaps a little better off medically than average. Zoe is not needing much pain medication above what she gets as a drip, is not needing oxygen during the day, and seems to be healing a bit from the worst of the chemo.

Now, about those cells.