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.