Day -14

No big changes today. We went in for a brief clinic visit to do blood counts and vitals, the big news from that is that Zoe’s blood pressure continues to be solid (90/60) off of her BP medicines. This continues to give us hope that her kidneys have or are recovering from her prolonged cyclosporine use. We’ll be doing a new GFR (kidney function test) on Friday, and then we’ll know more.

‘Til then, here’s Zoe playing with her favorite toy.


Treading Water

We’re still in the hospital, still waiting for some decisive news to allow Michelle and Zoe to return home.

Zoe had her best blood pressure yet today, 97/55, which is close enough to normal range to have the doctors talking about discharge. At the moment, we’re looking at Friday, however we are cautious about getting our hopes up.

There is evidence of Thrush, and she has a slight cough or rasp to her throat, which has us anxious that some new issue is cropping up. Cyclosporine levels are still a little high, so that continues to be something to monitor.

Hopefully we’ll know more soon, but the most important thing right now is that BP — that’s a very positive sign, regardless of whether we go home yet.

Blood Pressure Record

For reference, I charted a day or so of Zoe’s blood pressure, based mostly on Michelle’s record of her periodic BP tests. Originally I had intended this to be for us to look over rather than to publish here, but in the interest of documenting what we’re looking at, here it is.

Please note, this is just my and Michelle’s notes converted to a chart, not anything from the medical staff and shouldn’t be taken as such. Also, the “Normal” blood pressure for infants is somewhat variable, I chose a number in the normal range for reference.

Factors currently affecting her BP:

  • Cyclosporine levels, which have varied from too high to too low as the doctors work toward finding a dose that remains steady
  • Vfend potentially interacting with the cyclosporine, causing it to be difficult to properly dose
  • Time of day: when she’s asleep her BP tends to be down somewhat
  • Mood: when she’s upset, which happens fairly often during the BP cuff application, she can push it up somewhat; this is not universal though, some of her best test numbers have come when she was fussing
  • Dexamethasone levels; she’s on a reduced dose and it will be reduced again soon, but the steroid itself pushes her BP up

Not Yet

Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration.  ~Charles Dickens

We can’t go home yet. Last night was another hard night, more blood pressure scares as they tried unsuccessfully to rein in her rising hypertension. There were some moments of true fear where, when upset, Zoe’s BP rose to 180 and 190 systolic. Normal adult is around 120, normal infant… under 100.

It took the introduction of another new IV medication to bring her down, and by 2am or so she was holding steady around 124, a dramatic improvement over the past day. Today she was down to 119 or so, a reasonable number given that there is an expectation that her BP will be high due to the steroids. From what we understand from Dr. B, the longer a person is on steroids the worse the side effects become, and we’re definitely seeing that. Luckily the dosage of Dexamethasone was reduced by half, and we should start seeing some improvements. What we have seen today could be a result of that reduction.

That was the bad news. The good news is that Zoe’s kidneys seem to be functioning normally (hypertension often has renal causes from what I gather), her heart looks good, and there were no bad indicators or causes for worry on her EKG, ECG, or ultrasound tests that she’s had in the past two days.

I’ll take it.

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.