3:07pm
Well, we’ve identified the giant gap in care, and as shrewd readers have probably already predicted, it’s dental. It turns out (despite what multiple people in the hospital predicted) that University of Pennsylvania runs a dental school but that they won’t adjust Nathaniel’s dentures unless they also created the dentures.
And there is no “Penn Dental” network the way that there are dozens of doctors who’re part of Penn Medicine. Or rather, there is a Penn Family Dental group, but they also won’t adjust the dentures unless they were the ones who placed the dentures.
This is all starting to feel like a giant conspiracy by dentists and as I have very few positive experiences with dentistry in my childhood I’m about fit to be tied.
We also have a tentative date for when Nathaniel could be discharged — but no idea what the plan for post-discharge is, so I’m not going to list it here yet. So much depends on whether Nathaniel can eat.
***
11:59pm
I take it back. There are more than a few gaps in care and I’m going to make sure that the transplant coordinator hears about them. Waiting multiple days for the right CF-treating drugs, equipment, etc. is just not acceptable when everyone involved knew what Nathaniel would need literally weeks in advance.
In other words, I’m a grouchy bear who wants to raise hell.
But on the other hand, the hospital is addressing each thing as we bring it up, and while they’re not exactly timely they’re also doing juuuust enough to make it difficult to raise full hell, because by the time they resolve some of the issues Nathaniel could be at whatever the next step is.
So here’s some good news: he’s beginning to walk without a walker or other support again. He’s able to move himself around in the hospital bed and he’s actually quite skilled at maneuvering a self-propelled wheelchair. He’s regaining strength in his legs, neck, and arms, and doing a lot of core work in PT and OT. And all the labs that are supposed to be good are good.
He’s worked really hard to get this far and it’s great news all around. Even if it does mean I might be sending a strongly worded “and exactly what are you going to do to prevent this for the next patient” letter to patient advocacy.
Not every day is going to be all good news, but we’re getting there.