Today was a bit rougher.
Zoe has been having episodes of pain that seem to be originating in her belly. She starts to pant and fuss, her abdomen gets hard, and it takes a bolus of morphine to get her comfortable again. Films of the area show the abdominal cavity as being dominated by the spleen and liver, with little room for the other organs. The doctor says it's conceivable that even bowel function could be painful when there is so little space for the intestines to function.
Today, one of the episodes was accompanied by her hands and feet turning deep purple--as well as another fever.
Platelet reaction? Well, not really easy to say. The fevers are not quite lining up with the transfusions in an expected reaction sort of way. But, again, they aren't ruling it out.
She was transfused with matched platelets last night--and did not get a boost. Her platelets are at 3. Yikes. The PA said that she demonstrates just about the most extreme resistance to platelets as they've seen. As long as she doesn't have any major bleeding events, this is not a horrifying thing. But, it's still concerning, nonetheless. And, she had a bloody nostril all day--which doesn't do much to calm nerves.
So anyway, the purple extremity episode passed after about 20 minutes. Blood labs taken to look at possible concerning causes came up negative (with cultures to determine possible infections taking 48 hours more to be ruled out).
Ultimately, while they know a heck of a lot about what it is Zoe is going through, they don't know everything. Again, only 7 treated cases of osteopetrosis at the SCCA since 1980--as opposed to the thousands they've treated of leukemia.
Not a lot of comparisons to draw upon for answers and insight in Zoe's case.
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Well, it's been 4 weeks that Zoe's been here at Seattle Children's. Only now is it really starting to grate on me.
I'm starting to feel cabin fever, I'm more easily cranky, and the long-term worry and modulating terror are wearing me down. Things like nurse personalities wield a huge power in terms of me maintaining my sanity, or falling prey to its mad twin. Today Jeff watched me get more and more dower, the more today's nurse made attempts at perkiness and breezy-chattiness with me, and high-pitched jabbering at Zoe.
Yes, I'm probably being insufferably judgemental right now, but I don't even really care. I do my best to maintain good behavior with all the nurses, even the irritating ones, as they are all indispensable to this process.
Some of them simply get more blank stares from me than others.
3 comments:
And still you have your humor!!!! I am sorry for the news that tends to weigh more heavily just when you feel that a well deserved breath could be taken. But breathe deeply my dears. Lots of em. You are such mapmakers for the medical world and world of spirit to continue blending.
love
nana brooke
If it's any comfort, what you are personally experiencing is normal!
Stress, fear, prolonged/inexplicable baby pain, the Unknown (!), and sleep deprivation over an extended length of time while trapped in a medical "box" room -- it brings out ol' Cranky in the best of us.
In fact, I'd be worried if you said you were "fine." :)
This too shall pass..... :) XOXO
I'm sure every nurse there has put up with much worse than blank stares. You're holding up magnificently, and no one judges for it. I'm glad you really don't care much about your judgmental feelings - you have much more important things to care about and only so much care to use.
I wonder if Zoe is so solid about who she is that she is defiant about letting someone else's platelets take hold to "define" her and how she "should" react. She's Zoe - those platelets are someone else. She's extraordinary!
Monica
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