Well, we’re home but still busy with transplant evaluation business. Yesterday morning, we got a call from the transplant coordinator saying that the team had been thinking that perhaps the reason that Patrick is running out of IV sites so quickly is because of a blood clotting disorder. They asked for another set of labs. Another 20 cc’s. That makes about half a cup drawn in a week.
We decided to have them drawn at our local hospital just to make sure that they were all processed as correctly as possible. But we waited till late afternoon so we could still fit in a nap and a hockey game first.
And we took the opportunity to have dinner with the mom of a little boy who just lost his intestines, becoming Short Gut, just last week. How strange to be the “experts” when it seems so recently that we were just as new and scared.
This morning, Patrick finally got to go back to school. He was so happy about it that when I met him after his nap, he shouted “School Day! Yay!” and threw his hands in the air. It was an extra treat that he had valentines waiting for him, so it was like all his friends wrote him welcome back notes.
While he was at school, I went to a dentist appointment for my TMJ and scheduled appointments with Patrick’s surgeon and GI.
While he napped, I talked to his insurance case manager, sorted out an error that had all of our transplant evaluation being billed to the wrong insurance company, and started research into charter flight options to Omaha.
UNMC gave us a travel window 2 hours shorter than Seattle’s and they are slightly farther away. So while a charter flight was close on the way to Seattle, it’s just barely feasible the other direction.
That’s not to say it isn’t possible.. But I learned today that there are a whole lot more logistics that go into a last-minute flight than I had considered. Not only does there need to be a plane in town and available, but there needs to be a pilot (who can’t be in a government mandated rest period) and a flight plan. That all can take 2 hours or more, and then there is the time of the actual flight, which depends on the size of the airplane.
It’s tricky stuff and may require more than company in my cell phone to pull off. It may even take an air ambulance. However, that could be good news. It might be enough to convince the insurance company to pay for the charter.
Tomorrow morning we’ll meet with Patrick’s surgeon here at home to talk about his touchy central line. I already called the University of Nebraska and had medical records sent. Tomorrow afternoon, the transplant committee meets to discuss Patrick.
So no, I didn’t get the laundry done and I barely got dinner made and Brian spent the day buried in work and church assignments that fell behind while we were away.
One of these days we’ll find a new normal again.
Patrick Hoopes 