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.
Doing the Grow Cells Grow Dance here in Delaware!
The Ursillo Family
Grow cells grow!!! Evan and Michelle, keeping Zoe in my prayers for you!!! Oh and by the way Evan, we got the test results back on little Zyen (thanks for your help and info), he doesn’t have hlh, he has X-linked agammaglobulinemia… so that takes a load off me!!! Hope you all are doing well… glad to see Zoe is in good spirits!!
You may have done this already, but if not, check with staff about finding a less noisy oxygen machine. They can be quite variable re: the noise factor.
She looks great, as usual. Love, Mara
@Tiffany that IS a relief, I’m glad to hear it. I don’t know anything about his diagnosis, but I hope that it’s something that can be cured or properly managed. Best of luck to your family!
@Mara, right now she’s not on it, it may have been temporary (we hope), but if it continues we’ll look into that.
I hope to see 8,000 days and counting and that Zoe gets better with every day. HLH took my 16 year old son Devan Levi from us only 5 days after he got sick. I miss him more than I could ever tell you wish you all the luck.
Evan and Michele,
Sounds like things are progressing but you still have your ups and downs. Zoe continues to smile through it all. Makes you wish you were a child again!! Praying for those cells to grow!!
I am working with a lady in Vacation Bible School who has a niece there with her daughter, Renee, she is scheduled to have bone marrow tranplant on July 16, 2010. I believe she is in the same part of Duke that you are in. Renee has black diamond fan anemia. It is a small world.
Praying for you all,
@John thank you for saying hello and for your well wishes. I’m terribly sorry to hear about Devan, HLH can be devastating. Hopefully greater awareness will help with that.
@Gail Michelle met them recently, they’re staying not too far from our apartment in Durham. Small world indeed!