Our daughter has a blood disorder. Not that daughter. The OTHER daughter.
Yeah, that's what I said.
Remember the surgery Violet was supposed to have TODAY? As the Chief of Staff of Shriners Hospital was preparing for the operation, he read a note in her file saying, "Recommend patient have further hematological testing done before any additional surgeries."
HUH?
Back up.
When we first adopted Violet I noticed a whole lot of bruising on her little body. As in, we're in China and I'm thinking, either awful things were happening in that orphanage or she must fall a lot. I mean, she has one almost "normal" leg and the other is much shorter and there is no real foot. Isn't that what you would think?
Naive woman.
If there's anything Violet isn't, it's disabled. She's differently abled, sure. But ain't no dis going on.
And yet the bruises continued to appear after we were home. I took her to the pediatrician noting my concern. He sweetly smirked and told me she had one leg.
Ignorant doctor, I, the now Enlightened One, thought. :-)
He suggested she fell a lot. I knew otherwise and asked for testing. Whamo! Blood clotting issue. Put her on Vitamin K, they said. So we did.
And we had surgery. And everything was fine. And another surgery and everything was fine. And then another...which wasn't. Vit K is not what she needed.
She bled. A lot. After surgery, we all felt further testing was warranted.
And HEY, we know a great hematology team! Can we get a discount? A 2 for 1 deal? Is that wrong to joke about?
So we met with them and they sent a report to Shriners which included a teeny tiny detail that we don't recall hearing and no one at Shriners noticed until this week.....a note that said,
Further testing recommended before child undergoes surgery.
Um, that would've been today.
We have no idea where the miscommunication lies and in the end what matters is...
THANK GOD the Chief of Staff reviews files and carefully plans for each surgery! He called and we were immediately seen by the Hem team on Friday and testing was run...
And Violet has
Von Willebrand Disease. Apparently, it's the most common blood disorder.
Did you know that? Me, neither. But my nurse sister did. Show off. 8P!
Essentially it means that Violet's body doesn't produce enough of a certain protein to be able to stop bleeding efficiently. That's kindof a big issue...like if you're having surgery, or if you're a girl who will someday hit puberty and maybe have kids....so yeah...it's pretty important to have treated.
Violet's going to have a challenge test on Friday....when Mia has her transfusion. They'll be checking to see if taking a certain medicine will bring the numbers up to where they need to be. So we'll have TWO GIRLS from TWO DIFFERENT FIRST MOMS having TWO DIFFERENT infusions at the same time in the same hospital room in the same hospital. What are the chances of that happening? I mean, really?
If the challenge test works, then she'll be able to have her surgery as long as she admits a little longer to the hospital and runs a drip of the meds....she'll need an additional med for a time...then she SHOULD be good until puberty hits.
But you know....in this house, we just try to roll with today and not really make plans for tomorrow...it seems to work better for us that way.
We'll keep you posted on how Friday's challenge test goes...good thing they have jello on the menu at the hospital. Violet does NOT like needles...but big sister Mia has been telling her all the great things about CCMC...the menu that's just like room service, the prize cabinet because you're brave, chocolate milk...
I think Friday night calls for a nice bottle of wine for the parents...you know, after the littles have fallen asleep with visions of SUGARplums dancing in their heads...
