Work-up Week Update

After yesterday’s post we got a lot of feedback, and today we have some new questions about the Reduced Intensity Conditioning and whether or not it will be right for Zoe. We’re working through those questions to be absolutely sure that we know what we’re getting into, and that the risks are acceptable. If we can’t do RIC, then we’ll return to our previous plan for full high-dose conditioning followed by a cord blood transplant.

Specifically what we’re trying to work out is whether or not the risks are too high to do a combination of RIC and cord blood. We’ve forwarded some questions for clarification along to the transplant team, and we’ll know more after meeting with them again tomorrow.

In the meantime, we’re half way through work-up week.

So far we’ve had several blood draws, EKG, Echo cardiogram, CT Scan of the brain, sinus, lungs, pelvis and abdomen, chest x ray, hearing test, crying capacity, and several meetings. Results have been positive for all her tests so far, with the exception of some low counts that have been a little low on and off for awhile (such as sodium).

We can say for sure that she has no disease or infection in her lungs, pelvis, and abdomen, that her hearing is fine, EKG is fine, and her heart is doing great. I expect we’ll see more results as the week goes on.

With regard to crying capacity, well, that was fun.

I don’t know if you’ve ever seen the movie Monsters, Inc., but the crying capacity is a little like the scene where the child is hooked up to a machine to extract her screams. No joke.

The nurse gets out a little pink plastic face mask with a tube that has an inflatable ring around the edge to maintain the seal and keep it comfortable, and then the mask is placed over the child’s face. It looks like a respirator or gas mask. We were told at the outset that 99% of children cry, but a deep sigh is still acceptable… right. I want to see the child that sighs into this little gizmo.

Zoe started off in her mom’s lap and the mask was placed over her face. She starts to cry, the machine hits 141, and the nurse takes the little mask off and says, “well the doctors usually want to see about 148, that’s about 100%, so 141 is 97% or so. That should be fine.”

Michelle says, “I’m pretty sure Zoe can do better than that.”

The nurse says,”Really…?”, I look at Michelle and ask, “Really?”. The nurse says, “Ok”, picks up Zoe and puts her in her lap this time. She holds the mask hovering over Zoe’s face, looks up at us a moment as if to say, “are you ready for this?”, then clamps it down nice and snug.

Zoe immediately gives a nice loud “WAAAH,” the machine flies up to 280, and Michelle says, “yeah!” like Zoe had just won a contest. We knew she could do it!

Zoe was calm again moments later, and we are now absolutely sure her lung capacity is what it should be.

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.