Pins and Needles

Visible from the hospital on top of a gas station

We’re waiting on the answer to what seems like every question at the moment, so things have gotten a little tense around here.

Zoe’s blood pressure is up and hasn’t responded as well as we or the doctors would like to her initial medication, so there is a decent probability we will not go home tomorrow. And, we’re still waiting on results from CCH on her genetic testing to determine if the disease is Familial or Acquired, which determines most of the rest of our year for us. Any day now.

Zoe had her first of the 4 weekly spinal taps this morning, and did well for that. She had a blood transfusion yesterday to help adjust her counts a bit due to the medications really building up now and taking an effect on her. She immediately perked up from the transfusion, her color improved and she seemed calmer, but her blood pressure is still causing concern. A Nephrologist was in yesterday to run some tests to ensure proper kidney function and isolate the cause of her high blood pressure to the medications rather than some other underlying cause, and the possibility of that underlying cause has us tied in knots a bit. She doesn’t need any more problems, nor does she need more holes poked or medications dripped. Poor thing.

Her BP is currently 157/89, which is really high, even for an adult. I don’t recall for myself but Michelle says she’s never even seen her BP that high. In recent days it’s been holding between 116/70-ish and 144/93-ish (when she’s really wound up/fussy), but this number today is her highest we’ve seen since the start of the treatment for her in a calm state. Possible outcomes are: she needs a higher dose of her current med, she needs a different med (if she’s not responding properly), or there is another cause of the problem. She’s to have an Echo cardiogram shortly to ensure it’s not her heart, and as mentioned there are tests out to determine kidney function.

Additionally she had an EKG taken yesterday to obtain a baseline reading — results so far on that are that test there is nothing to be concerned about.

Side note: the Internet connection here has been spotty the past couple of days, so it’s possible updates may be out later in the day or the next day depending.

A New Hope

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.