First, let me say I am grateful. Grateful that there is such a high level hospital for kids so close to home, so John can come out without driving all day, and friends actually have times when they might find themselves in the area. I am glad that the input of many doctors can mean one person might add something to the puzzle that another person might not have thought of, ever. I am grateful for a huge waiting room with recliners. All of a sudden, I'm grateful for a coffee maker in that waiting room. I'm grateful for the nightly blanket and pillow, and the shower room on the 7th floor that is set aside just for the purpose of people like PICU family using it. Grateful for the many moments when someone stops by just to ask how Mallorie is, to bring me something, to promise to pray.
But I also am grateful for Dr. B and the other doctors in her practice, and hospitals at home. I'm just thinking about that today. Really nothing specific. Or if it was, then I've forgotten it in the time it took me to write the short list of why I am grateful for where we are right now. I know I could easily think of more. But there is something I am missing about home, and I desperately hope our next hospitalization (may it not be needed for a long, long time) can just happen at "home."
Oh, yeah. I remember - the reason that made me think of hospitals at home is that a caffeine level was drawn over a week ago. I think on Friday, and was a "send-out." Meaning it's a test they don't do in-house, and have to send to an outside lab to complete. It's still not completed, and still sends "in process." Which, best that i can remember from working in a hospital, is not a guarantee that anyone in the receiving lab has even acknowledged receiving it. I ask from time to time, what about that caffeine level? The answer is always that it's a send-out. Once, someone told me they have to send it to Houston. All the way to Houston? Oh, yeah; we're in Houston. Then I learned it goes to Utah. One nurse called a few times, and never got through to anyone, but was able to leave a voice mail, but no one called her back.
At home, we have results in a couple of hours. We'd have to be pretty darned late going to the lab to get the blood drawn, to miss a chance to get same-day feedback. So, that makes me wonder. Why can't they send it to somewhere closer than Utah? Like, um, our town?
Mallorie had her MRI today. The attending doctor came by and said they need neurology to look at the results, because there are some changes when compared to the MRI she had done 3 years ago (to the day). On one side of the brain, and he says it doesn't look like she had a stroke, which was the thought, I know, going into the test. They say there wasn't anything seen in the fluid they took (twice) from her shunt that looked like infection, but now they wonder about some other viruses. I think he called them rare viruses, or unusual viruses. Mostly what I heard was no stroke. Because I was already wondering how much hyperbaric oxygen treatments cost.
When the respiratory therapist and nurse were retaping Mallorie's tube in her throat today, it slipped, and Mallorie gagged. They checked the tube position, and verified it was where it needed to be, and went on with the task of taping. It took me a couple of minutes, and then I realized. SHE GAGGED. She gagged. I checked with the nurse and respiratory therapist, and we all agreed. She gagged today, and gagging is good.
The nurse finally got through to the lab in Utah, and says the caffeine level was a little too high. I have trouble believing it, actually. Not unless it was compounded incorrectly, which I highly doubt. She's never high; we go in for checks, and she's low, if anything. So what this means, I don't have a clue. I sure hope at least one thing it means is that they re-check at some point.
This Try-somy Girl
6 days ago