After a short break for Michelle and I over the weekend that included a movie for myself (Shutter Island) and a birthday party and play date for Michelle and Maya, we’re back on schedule at the hospital. It was a really needed break and I’m grateful my mother is here and willing to sit in with Zoe while we try to see what normal life is like for a few hours.
There was a new doctor on over the weekend, somewhat younger and who mentioned she had only ever seen two cases of FHLH in her career. In both cases, they found it much much harder to treat the child than they have in Zoe’s case, lending us new hope that this may not be the Familial form of the disease. The reason they are making that judgement is her age, very young to present the acquired version, but as previously mentioned she was very very ill prior to presenting, which is one way that the acquired form manifests itself. We may have our hopes dashed soon enough when the genetic tests start to come in from Cincinnati Children’s Hospital, but in the mean time it’s what we are holding on to as a way to escape this disease without further harm to Zoe.
An update on Zoe’s numbers:
- Her weight has again dropped a bit (not a bad thing) to 13.5lb
- WBC: 3.2 Sat, 4.3 Mon
- Hemoglobin: 8.8 Sat, 8.9 Mon
- Platelets: 191 over the weekend and then 217 today
- Ferritin: relatively unchanged at 880
In general these are positive or neutral signs, though the WBC count is just under normal. Ferritin is a slow moving indicator, which is why they don’t check more often for it’s level. Platelets are steadily rising, a very good sign, and WBC and other counts are holding around normal range.
Right now we are on track to leave the hospital as of Friday assuming no symptoms reappear. We’ll be in regularly for medications and Zoe is set to begin getting a spinal tap every week for the next four weeks starting this thursday. She has to have general anesthesia each time along with the other inherent risks of surgery, so that’s a little unsettling. Every taste of good news seems to come with a bitter side dish around here.