We had a peaceful and quiet Christmas together yesterday. No visitors, no PT or OT for Nathaniel to do, so we watched Hogfather (a British Christmas movie based on a Terry Pratchett novel) and ate take out.
Today Nathaniel’s blood tests from yesterday came back with some anomalies, specifically a rise in his white blood counts that indicates he probably has an infection somewhere.
So discharge isn’t happening tomorrow and is now delayed until the docs know what’s up and come up with a treatment plan.
yay.
Anyway, we’re both in the city, catching up on needed sleep after a day of more excitement than planned. My train trip out to see my folks was successful but also veered from the plans. And then, just for kicks and giggles, Nature layered a “wintry mix” (ice storm, really) on top of center city that has every surface either slippery with ice, slippery from the thick layer of salt crystals the property managers put on the sidewalks, or both.
Tomorrow we start again. Sunday I hope to go home and switch cars since I really should have the one with the disability tags and the wheelchair in it anyway once Nathaniel’s discharged. The rest is still hiding behind the fog of war and will reveal itself further in the daylight.
I thought I was going to have to start this post with the bad news that Nathaniel wasn’t being discharged on the 27th and they’d pushed it back to the 30th.
The reason they needed to push back, they explained, was that they can’t get all his tube feed supplies put together by the 27th due to the holidays and people taking time off etc.
Nathaniel replied “then I guess I will just have to drink boosts [the nestle high calorie shakes] until you can deliver the supplies” and stuck to that position with such stubborn ferocity that, well, that’s what we’re doing.
It probably didn’t help that I sent a sternly worded reminder to the transplant coordinator that this is”team Nathaniel” and not “team we-make-decisions-without-Nathaniel” and that a change was required. A few minutes after that was the meeting with the doctors, who up until that point had sent literally everyone but themselves in to discuss changes etc.
You can take this as a lesson in standing up for yourself at medical appointments if you wish — more people do need to learn to advocate for themselves. But if you do, also take it as a reminder that if you know your shit then you earn a place at the table with the doctors, and if you are a danger to yourself then people will make decisions without you. Nathaniel and I didn’t win the argument because we were stubborn, though that didn’t hurt. We won it because for every objection that the docs could come up with — knowing how to use the tube feeding, knowing how to adjust his insulin levels, being able to do his activities of daily living, etc. — we could prove that one or the other of us already knows it inside out and backwards, and generally it was the patient with the knowledge.
Advocacy is really proving to the doctors that you know your shit.
Nathaniel is currently enjoying a cup of hot coca and an IV bag of iron, and I am working on figuring out which items in the room can be taken out of the room today so that I don’t have to try to pack the whole room on Saturday. (Tomorrow I will do more of the same, since Friday I will be in Lancaster celebrating Christmas with the Kent clan.) It’s a better ending than I expected.
Possible updates to come, keep an eye open.
***
9:40pm
Well, we’re packing up parts of the room and bringing them back, so this is actually happening. Merry Christmas everyone!
Great news: Nathaniel is going to be released from the rehab center this Saturday (December 27). At that point, he’ll come to the hotel where I’ve been staying until at least January 3 so that we can get through the next set of outpatient appointments before we go home.
This of course means I have spent the bulk of the day on the phone scheduling all the outpatient appointments that need to be made.
I’m also home to pick up his respiratory therapy equipment for the hotel. They’ve made accommodations for us to ensure that Nathaniel can easily use the room. He’ll be able to do PT/OT in the fitness room if he wants.
He will still be on the feeding tube but I was able to make a January appointment with his dentist to try to adjust the dentures. And we got tentative permission that Nathaniel can have oral surgery (pulling the last of his rotten teeth) at the 3-month post-transplant point until waiting for the six-month mark they usually prefer for post-transplant patients.
Nathaniel is really excited to get out of the hospital setting. It’s a great Christmas present.
***
6:37pm
The care and feeding of a CF patient’s lungs virtually fill an entire luggage cart on their own. On the plus side the equipment had all gotten smaller and lighter than its predecessors. On the minus side we said that about Univac compared to Eniac too. At least I’m getting my exercise.
(well, slightly later actually but I was busy fighting with the video formatting)
In addition to puttering around in his room in a wheelchair (when he’s not tied to the feeding tube, anyway) Nathaniel is walking and taking stairs again.
This means he has all the skills necessary to walk across the driveway, up the steps onto the front porch, across the porch, and up the step into the house!
…not that he’ll be doing it tomorrow, but he could.
The number of boxes that Nathaniel needs to check in order to qualify as having (re)mastered the activities of daily living grows smaller each day. He took a shower today on his own (with a nurse standing by) and took care of the bulk of his own getting dressed. He’s still having trouble eating, but he’s trying new foods every day. It’s a process, and the process is working.
He will not, however, be home for Christmas. Not even hotel-home. That’s really hard but… well, there’s an alternate-universe version of me somewhere out there, probably a LOT of versions of me out there, who are planning a year of wearing black and planning funerals and doing all the things that widows do. I’m not a widow. He’s alive.
He’s alive and he’s configuring third-party game controllers to play all kinds of retro games with equipment he doesn’t even have yet, and complaining that his neck hurts (He likes to sleep sitting up and very often snoozes in the position you expect from a great uncle after thanksgiving dinner, with the chin on the chest. Not good for the neck, that position.) and ordering things he needs for the hospital and things he thinks the hospital needs, and asking for this thing to be plugged in there and that thing to be unplugged and the wires can go in the box and the instructions should be kept and all the things he does when he’s becoming more energetic.
It’s a better timeline than I dared hope. I’ll take it.
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.
If you have some time off between now and the end of the year, please come visit Nathaniel.
While he’s gaining strength and getting around better every day, it’s not easy for him to switch between activities (playing games vs using the computer for example) or get something out of the fridge by himself. He finds his days a lot more relaxing and healing when there is someone to not just visit, but help him through the day.
It would ESPECIALLY great to have folks come see him on the 26th, because anne will be at her family’s Christmas out in Lancaster that day.
Nathaniel is settling in to the rehab center. He had an hour and a half of occupational therapy as well as an hour and a half of physical therapy, both of which gave him a pretty good idea of what’s to come. He did a lot of leg work today and sent me a photo to share of him on the exercise bike.
Look, it’s got video!
I missed most of this because I went home to check the mail, fill my drug boxes, and drop off the laundry.
I found out that my laundry service serves a chunk of Philadelphia, so if your’e looking for a laundry service that will wash, dry, and fold your clothes within about 24 hours with good prices, check out Lessen the Loads. Or, if you’re a person who’s willing to wash someone else’s clothes, check out the same. They have been a lifesaver for us, especially when I knew I was wearing clothes but had no idea how long I’d be back at the house or when.
Anyway, back to Nathaniel: they’re having a bit of trouble getting the feeding tube to actually pump food into his gut, but that’s not unusual and he’s working through it. He’s also getting some work on his computer done, which by itself is an accomplishment because for the last year he’s bene too tired to make much progress. I suspect that over the next 12 months we’re going to find out that a lot of the problems he’s had for the last 24 months were actually his liver being a whiny little ass and now that there’s one that works things will go more smoothly.
First appointment with the liver transplant outpatient team is the 16th so we’ll learn more then!
***
9:30pm
A quick update to add that Nathaniel’s discovered none of his shoes fit because of the fluid he was/is retaining. So that’s fun.
I spent the day Christmas shopping with my sister in Lancaster and I have to say whoever invented trains to get around had it right. The Amtrak Keystone line was a comfortable ride and there is no way I could’ve spent as much time with Mary as I did if I’d had to drive the route back and forth, especially since it stared flurrying there before I left.
The NWS’s snow prediction for tonight is hovering around 3-5 inches before midnight and it hasn’t even started here in the city yet.
Now to finish my shopping so Amazon Santa isn’t late.
Today Nathaniel is being discharged from the hospital.
TODAY NATHANIEL IS BEING DISCHARGED FROM THE HOSPITAL.
That doesn’t mean he’s going home, mind. He’s being transferred to an “acute rehab center” a mile away, on the other side of the Schuylkill River. THIS IS STILL AMAZING PROGRESS. SORRY FOR ALL THE YELLING, BUT I’M YELLING.
Anyway, it means we have a ton to do today and a ton of people to talk to. All the discharge stuff has to be done on this side of the river and then when we get to the location on Lombard St. we have a ton of intake stuff to do.
The average stay for someone in acute rehab is two weeks but I want to make our expectations known right away: we think he’ll be in rehab longer. He’s got eating, teeth, and food issues that still need to be resolved. (He’ll be going over to rehab with the feeding tube still in place.) He’s got a lot of strength to gain back. He’s got a lot of energy to regain and a lot of sleep to catch up on. And it’s still essentially a hospital — blood draws will be less frequent but PT and OT will be every day. While hopefully Nathaniel won’t have anything beeping at him anymore except for the feeding tube, it doesn’t necessarily mean that his stay will be quiet or peaceful. In other words, this won’t be a tuberculosis rest home, it’ll be work.
After Nathaniel’s released from acute rehab (assuming everything goes to plan, which nothing ever goes to plan) he’ll go to our fancy hotel room at the Element for a little while so that we can easily make it to transplant clinic appointments, etc.
Then we’ll go home.
I hope it’ll be a case of giving him a trip home as a just-after-New-Year’s present, but we’ll see. It’s been a wild ride so far and while we’re no longer in a place where his health can and will turn on a dime, well. If life followed expectations we wouldn’t be here in the first place.
Anyway, many things to pack. More later possibly.
***
10:13pm
Nathaniel is officially discharged from HUP and officially admitted at the rehab center. It’s a much smaller facility — only about 58 beds? — and off of South Street on the Center City side of the Schuylkill. Parking is an adventure (available at a garage that’s more than a block away). The front door is no longer the front door (but you don’t find that out until you arrive and see NOT AN ENTRANCE painted on them) so tonight it was a cold windy walk.
The facility is definitely on the older side of the ones we’ve been in, more a Silverstein building than a Clifton, if you know HUP. But it’s clean, nice-looking, and the room is a pretty good size. They provided Nathaniel with a mini-fridge for drinks and food that he eats throughout the day. They weren’t quite prepared for Nathaniel’s CF — missing the enzymes for his tube feeds and missing the 7% saline for his respiratory therapy — but they’re working through all that tonight and it should hopefully be straightened out by tomorrow.
Nathaniel and I are both overwhelmed. Big changes at this point are almost impossible to immediately process (not that they’re easy to process when you’re not in the middle of a medical crisis) so the day just felt like one more day except with new activities that include “pack all Nat’s shit in the car” and “unpack all Nat’s shit into the hotel” and “did Nat get there ok?” and “why are there so many cars between me and my goal today?”
When you wake up to nothing but horns, it’s a good time to consider what the traffic might be like this morning. Huh.
***
11:30pm
Huh. Forgot to hit publish this morning. That explains why everyone’s been so quiet anyway.
Well, except for the part of the quiet that consists of asking “Where’s [consult] and [other consult]? Aren’t they going to round today? We have questions for them,” and not getting answers.
Today was mostly trying to get small things done and for Nathaniel was sleeping on and off. We played rummy and door dashed grocery-like items to his room.
I noticed Dr. Glaucomflecken did a video on respiratory therapists. As he points out, their skills and abilities are not well known even inside the hospital, much less outside. So here’s a little education slash entertainment for your night.
