I find I have to repeat that to myself: "Complications are expected," as they told us prior to when this entire BMT process began. It's a series of fires to be put out, and man, is it an extinguisher dance!
Last night was my night to stay in the hospital, and just as Jeff had experienced, I awoke at 3AM to a group of people huddled around Zoe's bed trying to determine whether she needed to go back to the PICU. Her breathing was labored, her temperature climbing, her CO2 gas levels too high, and her blood pressure was registering a wider spread between the systolic and diastolic numbers than they like to see.
Even so, the respiratory therapists who had tended to her the night before seemed to think she sounded better on the whole than the previous night. Her heart rate was better, her breathing rate was less rapid, and she didn't sound as "junky" in her air ways. They decided to confer with the PICU attending before sending her up there. I fell asleep while waiting to hear. I awoke a few hours later in the same room, next to a baby that sounded better, no longer febrile, and her blood pressure was normal again. Phew!
What had changed for the not-so-great was the fact that, on top of her still dramatic GVH rash, she now had petechiae all over her body. Petechiae shows up for different reasons, but definitely when one's platelets are extremely low. They are mini spots of hemorrhage in the skin.
I can't remember if I explained this before, but platelets are the "ingredient" in the blood that causes the blood to clot--a very important function. As Zoe's bone marrow is severely compromised, she no longer makes her own blood, and consequently does not produce platelets.
She's been receiving blood and platelet transfusions regularly since the whole process began, but recently, lab analyses have shown that the last several platelet infusions have not given her any platelet boost at all. They want her at 5o; she's currently at 7, and dropping.
When platelet boosting doesn't happen after a transfusion, they assume that the body and the product are rejecting each other (or, this is what I understood them to say, but in my sleep deprived state, can't be certain). They did an HLA typing to see if they could come up with a specific match for her.
Luckily, they found one pretty quickly. She will be receiving those platelets tonight, and hopefully they will do the job and stick!
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So, a side plug here: Please consider donating platelets--heck just donate blood if donating platelets seems too much. There is a shortage of platelets, and we are learning just how life saving they are for people--such as Zoe--who need them. Do not go to the places that pay you for your blood products. By law, products obtained that way can only be used for research. Donated blood products are used in medical situations.
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They have upped Zoe's steroid dosing to attack the rash more aggressively.
The way Manley explained it (but really, how I remember it--I guess I'm saying don't take my blog for being absolutely accurate medical fact), the donor T-cells are the ones who are attacking Zoe's skin right now. They do remove some of the T-cells from the donor stem cells to limit this sort of thing, but they can't remove them all as they help the stem cells engraft. Too many T-cells removed and the graft fails; too many T-cells left in, and they have a rampage party.
Manley said that the way Zoe's rash is progressing is classic and expected. He pointed out the signs that the steroid is doing its work, and he's really pleased that her fever is down. I think I was fooling myself about her mouth looking better, because it was looking like hamburger today.
Starting now we are wondering if the next morning lab results will show some spiking of her neutrophils and WBC's: the first signs of engraftment.
For now I will take a lab report that shows a spiking of her platelets.
4 comments:
sleep deprived,
"in the flames"...
don't quote your medical technicalities?
yet you are "tracking" incredibly well.
wow! way to go you two.
love and hope from us all.
We are tracking Zoe's daily progress and are sending all our best wishes and hopes and healing vibes your way!
Good morning caretakers of little ones. Zoe's latest picture reminded me of Gabriel's adventure with hemmoragic measels. (uh spelling not up to snuff). Yep, one day my miserable baby awakens covered with a BIG rash, or... something! And this mother was undone! We got to wait in the basement steps while every doc and nurse in the clinic came to observe this rare "case" but yet had to remain...isolated. I remember the ordeal, Gabriel does not. Praise the lord!!
It may seem odd but I liked reading that you woke up to a crowd of "docs" around Zoe. I am so grateful that Zoe (and her family) have so many healers and caretakers right at her side. It is a very powerful demonstration of love and support. Magic is everywhere.
love nana brooke
At +9 I hope I'm right when I say this may be the bottom, and now or soon, you will start to see some inspiring positive signs that make you know this hardest leg of your journey has been about more than just "fires." (oh, the safety of euphemisms!) :) Like little shoots of green poking through the snow, those little signs can be sanity savers....and it's good to hear the docs feel you are close. I remember Ray had a platelets issue too and the supply he finally responded to best was from his own father. How sweet. :)
It's so hard and so amazing (when you really think of what is happening biologically and chemically). Been there, done that with the late-night 911's, and it's not for sissies. You, my dear, are my hero. Hang in there!!
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