I was walking through the children’s clinic wing of the hospital a couple days ago with Maya on the way to drop off labs, and the thought occurred to me: I don’t know what day + we are anymore. I worked it out, and it appears we are at Day +55 now. 45 more days ’til +100.
What a difference being outside of the hospital has made. We’ve transitioned from micro-management of Zoe’s care, stress and hospital life, to trying to become a whole family again. Fewer worries about which Day+ we are, more worries about making sure Zoe and Maya both have their share of our time. The scares are almost gone, replaced by calmer fretting about Maya having a bad dream, or Zoe not getting enough time on her belly with her lines in the way.
They call it the “new normal”. Finding our routines, our calm, yet still managing the care of a child who needs just a little bit more. Zoe still needs a great deal of care, and will continue to for some time, but we have to work it into our lives in such a way that we can provide normalcy for ourselves and the girls.
Early on in our inpatient stay at Duke, during a visit with Dr. P, Zoe’s primary doctor, the subject of Zoe exiting all of this as a “normal” little girl came up. We were worried, with good reason, that she might not escape this disease without major problems — neurological, developmental, or even death are reasonable possibilities. At the time even the thought of returning to normal seemed too much to ask, even.
Dr. P made a point of saying that, after we made it through all of this, there would come a time where we would have to start treating Zoe as one of our kids, not as a patient. It seems strange to say it, but it’s true — it’s hard not to see everything through the lens of her disease at this point. He explained that it is common for parents to struggle with enforcing rules, establishing fairness among siblings, and encouraging the kids to bump and tumble and, well, grow up.
One day we’ll have to transition out of emergency mode, and into our “new normal”. That’s what this past week has felt like, that we’ve begun that journey. We have worked out the med schedule and we’re maintaining Zoe’s care, but we’re also doing some work here and there, and taking time to do fun things again.
Michelle and Maya made it to the beach for a day trip this past weekend, and Zoe and I stayed here in town and played and watched a series of bad comic book movies on FX. That sort of Sunday would have seemed inconceivable a short time ago. I had been determined to see that Maya got to the beach this summer, but it was looking unlikely there for awhile. I’m thrilled we pulled it off though, Maya had an absolute blast.
On the medical front, we have a couple more weeks of TPN while we transition Zoe back to breast milk. She lost her latch in the transplant, she simply appears to have forgotten how, and so far none of the therapeutic suggestions have made much difference. In the past few days we’ve started giving her a sippy cup, and that has gone really well. She’s a messy eater at the moment, but hey give a baby a break, right?
Her counts have been stable, and her platelets are into the normal range on her own. Dr. P made the joke yesterday that she could start donating platelets now. We’re thinking we’ll hold off on that, but he’ll be here all week folks!
WBC counts are hanging around in the 2’s and 3’s, and Zoe is getting her “G” (GCSF or cell growth medication) about once a week now. The feeling is that she will begin to produce her own WBC any time in sufficient abundance not to need it, but whenever the count goes below 3 she gets a dose. Hemoglobin, minerals, everything else are looking great. The only thing she has needed since discharge continues to be the GCSF.