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.

3 thoughts on “Work-up Week Update

  1. I wish you all the best. All this reminds me of going through this with Ean it’s a lot to go through, but having family is the best thing to help us get stronger for the babys. Zoe looks adorable she looks like a strong baby. You all are in my prayers.

  2. Good for you, Michelle, for letting Zoe show her stuff – that’s some serious lung power!

    I have unwavering trust in your baby girl and her people :). Mara

  3. Pingback: More on Reduced Intensity Conditioning, Cord Blood, and HLH : HLH Journal

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