I don’t know what a 2 hour blood test entails; all I know is I don’t want to drive a couple hours to put my four-year-old through one tomorrow. But alas. Exhaustion thy name is 22q Deletion Syndrome.
So yeah, tomorrow we wake up bright and early and hit the road.
To rewind, after way too many ups and downs to even recall on this road to schedule a P flap surgery, our new plastic surgeon insisted we see hematology considering what we described going through during Josie’s palatoplasty as a baby.
Everyone thought it was kind of pointless including me and even the hematologist who kept looking at me somewhat incredulously as she asked me why if Josie has had 4 heart surgeries, and many other surgeries, and just one surgery as a baby that resulted in hemorrhaging, did our current plastic think we needed to see hematology now. I told her how I wanted to kinda hurry things along so we could proceed with a surgery date, and later that afternoon we got a call from the hematologist saying she was going to put through the blood samples she’d ordered, but she was so sure Josie would be normal she was going to go ahead and send out a written clearance and call the surgeon herself to clear her.
So we were all “Yey! How great! Things are working in our favor in a hurried manner for once!”
*cue tires screeching*
Shortly after that (a few days maybe?) the hematologist personally called back saying she’d talked to the plastic surgeon and told us we had to hold up surgery for a couple months because one of the tests she was sure would be normal wasn’t. She even ran it twice because she was in disbelief.
Apparently add hematology to our list of specialists because Josie has a platelet function issue.
What exactly? Don’t know–that’s why we’re headed to Shands in the morning! For a two hour blood test no less. Poor baby doll.
Between then and now, I also got a call from the plastic surgeon (and an email from her cardiologist. I feel so important sometimes). She explained how she suspected the possibility of clotting disorder even despite the previous minimal blood tests and that with surgery on the palate (she’d have to cut through a lot of where Josie had been operated on previously) there’s so much more blood sources than in an arm or leg and she could have significant bleeding.
Look I even took notes on the call.
The parts of our convo I found most interesting were when the surgeon said we can’t say that’s really why she had bleeding complications during her palate repair (I still think they nicked something). And she may need a blood transfusion prior to cutting and possibly something like Factor 7 to help her clot (which cardio says is just fine and dandy with them).
It’s a journey.
Wish us godspeed for tomorrow–and good veins!