Author: anne gibson

7:04pm

I have concluded that there’s no good way to take a photo of the amazing view we get of the city skyline from here because there’s always a window or a bathroom wall or some other reflection on the glass. I know from pinball that non-reflective glass is as expensive as hell, and it might not be as safe as the glass on these windows, so I’m not mad. It is sad though.

Matt and Beck came to visit again and that made Nathaniel very happy. Video games of many types were played and pinball stories swapped. It’s a good way to spend an afternoon and they are great people.

Meanwhile, I have declared “war” on the hospital’s inability to do anything about Nathaniel’s denture situation. His current dentures do not fit correctly. We knew that before we came in and, in fact, he was supposed to have appointments with two different specialists in october to see if he could get a full mouth of implants instead of the constant battle with dentures.

Then his liver decided to try to kill him and I canceled the appointments.

(There was a point when I thought Nathaniel was going to die where the darkest part of me thought “well at least we won’t have to pay for implants” because sometimes the human brain will do absolutely anything it can to squeeze a little dopamine out of an all-adrenaline situation.)

(I don’t think dopamine and adrenaline are friends.)

(Then again I had no idea how much of a bastard the pituitary gland is before any of this started so hey, shows what I know.)

Nathaniel and I have discussed the denture situation with various members of the hospital staff and each time we get the same answer: you can’t get help from the dentists in the HUP system unless you’re outpatient, but to get outpatient you have to be healthy enough to eat your food… which is much more difficult when you don’t have working teeth. Bonus points for the two different docs who have said “yeah we know that the pureed food diet is boring and bland but you can gain weight on that so you can get out and get your teeth checked”.

Yeah, no.

It took me three weeks of softly pushing to get a refrigerator in Nathaniel’s room so that his shakes were cold and he didn’t need to ask a nurse to go fetch one for him. (All the CF patients on the CF floor have fridges in their rooms but because Nathaniel’s not on the CF floor, he’s on the liver transplant floor, he didn’t get a fridge and he was told it’s “not floor policy” for him to have one.

I’ve learned that a lot of the time “not floor policy” either means “we don’t know who to ask” or “we don’t feel like asking”.

A few days ago we asked again and this time the (amazing) charge nurse Cece knew who to ask — the floor secretary, who also knew who to ask, and we had a fridge in a matter of hours.

Now, maybe I’ll succeed in finding someone in the HUP system to fix Nathaniel’s teeth or maybe I won’t. And I’m not afraid to start calling dentists and saying “hey can you come visit him in his hospital room?” until I find someone who will do the work. I’m not paying for dental insurance to sit around and not-use it when it’s desperately needed.

But “it’s not policy” doesn’t mean you can’t do it, and i’m not taking it as an answer. I’ve written too many policies. Hell, my motto at Vanguard was “be the first person to write it down so you get the policy you want”.

(That was a frisky little rant.)

His liver is working well and his kidneys are recovering nicely. He’s up and walking (but still having trouble with the “getting up” part) at least as far as the bathroom and back. He kicked my ass in the last hand of a game of rummy earlier, which makes me very happy because it means his brain is working well. Like everyone in his very uncomfortable position, he’s stiff and sore and his tailbone is very unhappy about being in a bed for the last 55 days. But the biggest thing holding him up is his weight and strength and solving the teeth thing feels like the right direction to move to fix it. Or at least the only direction I personally feel I could exert some influence over.

***
11:06pm

I think I forgot to tell everyone — Nathaniel got his hair cut!. He didn’t cut it as far as I thought he was going to (but then again he was a bit “confused” when he told me he was going to cut it back to the short cut he had in college). I’m planning to post the pics but I want to get his permission first since he is in a hospital gown in them.

11:24am

You may be noticing that the updates are more sporadic right now. That’s because Nathaniel’s feeling good enough to be awake most of the time most days, which means I am spending time with him and not toying with the computer. (Right now he’s doing his very best impression of “patient determined to fall out of the bed by sleeping with his head on the side rail” so I’ve got a minute to type.)

According to Transplant, Nathaniel’s current level of malnourishment and ability to eat are literally the things keeping him in the hospital. He’s done dialysis and his kidney numbers continue to improve. He’s healing as fast as his body can regarding the liver surgery — and if he was someone without all his extra complications there’s a good chance he’d be at home right now, or at least in a hotel waiting for things to heal up. His lungs are behaving well (outside a pleuritic pain that we can’t quite explain yet) and his diabetes is well managed.

He’s also down about 20lbs from when he came into the hospital. Note: he was down 30lbs, so this is an improvement. But also, when he weighed 153 he still had a lot of edema (and he still has a lot of edema today at 160lbs) so not all of that weight counts as, y’know, weight, the stuff that your body uses as fuel when it needs to.

The man is straight up bony to hug.

But putting weight on is, honestly, harder than taking weight off, and I say that as a person who’s been obese since about age 25. Not-eating, while it makes you miserable and can really screw up your metabolism, doesn’t require your stomach to be big enough to not-eat. Nathaniel’s stomach, on the other hand, has had plenty of time to shrink and just doesn’t want to be filled with anything right now. Bonus points that an over-filled stomach presses on the new liver. Double bonus points that his dentures don’t fit properly so chewing hurts like hell. Triple bonus points that the meds make food taste weird so even his favorite foods taste bitter and awful right now.

The team asked Nathaniel to get to the point that (in addition to his tube feeds) he could drink three Boost Soothe drinks (300cal) per day, and he’s struggling to do that.

And of course there are insurance complications to all of this. The hospital would very much like to have their bed back. But Medicare often does rehab in the form of “you get as much as four weeks and the point is to make sure you can go home safely even if you haven’t recovered by then”. From their standpoint if you can’t walk by the time you leave rehab, at least you should’ve worked with PT and OT long enough that we’ll know you need a wheelchair when you get to the house. The goal isn’t to fix you, the goal is to make you safe to go home.

The rehab center does nutritional rehabilitation as well, but they have baseline levels of eating that Nathaniel just isn’t hitting yet.  If the hospital were to release Nathaniel to rehab before he’s eating well enough to rehab, then when he was done rehab they’d just end up readmitting him.

***
4:39pm

Nathaniel’s walking around really well but gets winded pretty quickly. I’ve been spending the day yelling at billing departments who call even when the bills are covered.

12:50am

I was home on the 2nd and 3rd for some family chores, then came down to the city around 7:30 to check in to the Element hotel. It is very modern and as far as I can tell everything is working. (The Residence Inn was very nice for what it was, and I greatly appreciated the staff there… and also you need to have hot water if you’re going to run a hotel.)

Nathaniel had a good day. The kidney department decided to pull the line out of his neck, because they don’t expect him to need dialysis moving forward. BIG WIN and also the exact opposite of what Transplant told us two days ago so I’m just shaking my head and moving on. He spent some time with his parents, who left just before I arrived, so he didn’t have a lot of down time between visitors.

All good. More tomorrow, probably, but since it’s almost 1am I need to do some sleeping.

9:25pm

A rough day. The renal team decided that kidney improvements aren’t happening fast enough, so instead of the docs removing the line in Nathaniel’s neck, they decided he’s going back on dialysis today or tomorrow. The nutrition team decided Nathaniel has to eat 1700 calories a day to be able to have the feeding tube (when the transplant team had told him the number was only 900 calories).

The speech therapy team did clear him to eat and swallow any food he’d like, which is a plus, but nothing tastes good still, which is a minus.  And while I was busy all day with a family trip, he did get visits from Matt G and Emilia, two close friends whose company he very much enjoys.

Not a great day, but not a total loss either.

6:00pm

Day 50! One of my friends said “How can it be December already!?” earlier and I was like “No way, it is still October 12th, I am not buying any other nonsense.”

Nathaniel’s transplant team is starting to talk about his discharge from the hospital to an acute rehab facility. It’s not quite as good as going home, but it’s a good step in the right direction. There are, of course, some challenges to be overcome.

The first is that he can’t leave until at least December 4, because that’s how long his current IV anti-fungal will be running.

Similarly, his kidneys have to be behaving well enough for him to tolerate the prescriptions he’ll be taking outside of the hospital, and while they’re almost there, it’ll likely still be a few days.

More problematic is nutrition. Nathaniel is still on a feeding tube, and it’s working. (He’s gained four pounds this week!) But the team wants to see him eating (or drinking) a significant (as in “useful”) number of calories by mouth every day, so that they know he’ll be able to maintain his weight gain from home. Right now, that’s not happening.

One reason it’s not happening is because the anti-rejection meds he’s taking make everything taste weird. A quick poll of Reddit transplant patients reveals this is perfectly normal, annoying as hell, and does actually have the risk of slowing down his recovery because it’s hard to heal on no food. I’ve been picking up any and all of the comfort foods he’s eaten all our lives and bringing them into the hospital, and so far we have struck out on every one. I also mined the answer to my Reddit question for food that might be appealing, which is why he has two different variety packs of cereal, two variety packs of oatmeal, and a variety pack of crackers on his table, waiting for taste tests. (Fruit loops and Pops have already failed the test.)

Another reason, and this is totally me just bitching now, is because it is very difficult to get the Liver Transplant team, the nutrition team, the endocrinology team, and the CF team all on the same page about what Nathaniel’s allowed to eat and when. CF says as long as he is cleared to swallow it he can have it. Endo wants to avoid too much sugar for both diabetes and “do not feed the fungal infection” reasons. Nutrition wants to make sure he won’t choke on it, because there was a point in this set of shenanigans where he lost the ability to swallow and they haven’t cleared him to have actual food yet, and Liver would like him to eat low salt. Also Liver would like him to have left for rehab by now.

But the Rehab guy that came in earlier today says Nathaniel can’t be on the feeding tube to go to rehab (Transplant says he is wrong and I’m like “but HE is the one from rehab….”) And CF says Nathaniel needs a full salt diet, and/or as much sugar as he can get to bring his weight up. And nobody can tell me how many calories Nathaniel needs to be able to eat to go to Rehab (but they did finally tell me that Rehab will be helping him rehab the eating along with physical and occupational therapy). And while I am 100% sure I do not want to leave Nathaniel in the hospital even one minute longer than necessary, I am also very sure that I want him to be able to eat at whatever level is necessary before he leaves… when no one can agree what his calorie count needs to be or what it can be made up of, I get itchy.

Everything is in the course of coming together, though… this is just the face of modern medicine. (It’s not an American-specific thing either. Getting dozens of people all moving the same direction when each of them specializes in only one part of the trips, is hard no matter where you are.)  The biggest difference between medicine and project management in IT, as far as I can tell, is that when medicine kills someone you know immediately, and when we screw up a project in the IT world badly enough to kill someone, half the time you can’t even prove it was our screw up that did it.

9:34pm

Nathaniel’s been getting a lot of visitors, which is great, because it takes his mind off being in the hospital. Shout out to Faith, Sherrilyn and Andrew, Matt and Beck, and of course Mom and Dad for giving me opportunities to catch my breath.

All his numbers are looking good and he’s definitely on the shorter side of staying in the hospital. His rehab center will be on Lombard St. once he’s released, so we’ll still be in Philly for a while.

As for me, I took some time Friday to have my hair done, then got my flu, covid, and shingles shots Friday evening. By Friday night I felt like I’d been hit by a truck, so I came back to the hotel and slept until a bit after noon today. Sometimes the body just wants nothing to do with getting up, and “we just hit the immune system with a triple whammy” is one of those times.

The most stressful part of the day has been the hotel, to be honest. The building’s boiler is on the fritz and we’ve gone almost a week without reliably hot showers. While I didn’t necessarily want to pick up and move again, I’ll be checking us out of the Residence Inn and moving a couple blocks over to the Element starting December 1 because they have hot water.

That’s all I can report tonight; I’m too tired to keep my head up any longer.

12:10am

Happy Thanksgiving!

I’ve already published why I’m thankful: For Livers.

Apologies for the fact that the whole note below was written in the mindset that it was still the 26th. I wrote too much to go fix all of it now 😉

Both yesterday and today were big, full days. Nathaniel’s much sharper and aware of where he is than he was over the weekend; it looks like the meds changes definitely helped.

Both yesterday and today he worked with PT to get walking again. He took 10 steps for a total of 27 feet early this afternoon. He can’t quite yet get himself out of a chair or a bed, but once he’s on his feet, he’s able to move around pretty steadily.

Pain Management came over yesterday and worked with Nathaniel on, well, pain management. So far the new regimen seems to be working, though his back pain (he’s got 3 absolutely trashed vertebrae in his lower back) is still present and accounted for.

Nathaniel was transferred out of the ICU today into the Transplant wing. Same building, new room number. He’s still got an amazing looking room, but now his view looks out on the city instead of over the HUP campus. And it is a beautiful view.

He got a “holiday” from dialysis today, which a) means that his numbers are good enough that he can take a holiday, and b) means that it was easier to move him down the hall to his new room.

Our friend Matt Gusler came over to visit yesterday and today he brought his wife Beck. We know both of them pretty well from pinball and we’re thrilled to see them both.

We also got news that it’s possible Nathaniel could be released from the hospital as early as next week. Honestly? I’m not holding my breath. It would be nice if he was discharged, but I’ll be surprised if he’s off oxygen and off the feeding tube and we’ve got all the edema straightened out by next Monday.

But we did learn more about the overall plan: when Nathaniel is discharged, presuming that he doesn’t need skilled nursing to handle things like tube feeds or the like, he’ll go to a rehab facility where he can continue to build strength and regain some of his activities of daily living. It’s possible he might need dialysis for a little while longer after being discharged, or it’s possible his kidneys will recover enough by then and he’ll go without.

Either way, the rehab center is a mile closer to the hotel I’m in than the hospital is, so it’ll theoretically be easier for me to get to. I say theoretically because I’m as close to center city as center city gets and nothing seems to be easy to get to from my current location, except the Dunkin Donuts I use as a landmark to spot the place. (To be fair, I’m not spending a whole lot of time in the hotel right now except to sleep, so it’s not like I’ve had a lot of time to go shopping.)

So best case scenario is that he gets discharged next Monday, spends two weeks in rehab, and then gets released before Christmas. (We’d most likely still need to stay in Philadelphia for a few more weeks for the many doctors’ visits and tests that they like to do post-transplant.)

A more realistic scenario is that he’s in the hospital another week or so, spends four weeks in rehab, and then we spend a few weeks in Philly and he comes home say, end of January.

At least I have the confidence the dogs are going to be pretty well muzzle trained by then, since I’m paying for them to be trained while they’re away at “boarding school”.

It looks to be a very Philly Christmas. And I’m OK with that, as long as the gift we’ve received keeps on giving.

More later, when I’ve slept and it’s properly turkey day.

***
11:59pm

More good news: Nathaniel is off oxygen and no longer has all the heart monitors hooked up. He is now 5000% less prone to making machines beep. Plus he has all remaining hook-ups on the same side of his body.

The team removed his last remaining abdominal drain as well, so that will no longer be a problem child.

I came home to eat thanksgiving with my family and then swung through the Gibson party on my way back to the house. It was wonderful to see everyone and I know Nathaniel wishes he could have come along as well. Who knows, maybe Christmas will work out that way instead?

His parents went down to visit him tonight while I worked on paperwork to ensure his long term disability payments keep coming. (I’m pretty confident that “not out of the hospital from the liver transplant yet” is a suitable reason for not working but you never know with insurance companies.)  I’ve still got bills to pay but getting the medical stuff in shape was a huge win.

1:43pm

I want to start with a great big thank you and a hug to everyone who’s helped us and is helping us here in the hospital. You didn’t have to help, but you did, and it means the world to us.

Nathaniel’s been cleared for pureed food, which is great because it means he can eat more than just broth and water ice. We’re not sure when that will kick in but we’re big fans.

The delusions have joined up with paranoia to make the morning interesting, but he’s napping right now.  It’s all good — we’ll find our way.

Both Dr. Hadjiliadis and Dr. Rothstein — two of our favorite docs — have stopped by to see Nathaniel today. It’s the first day Dr. Rothstein has sen Nathaniel since his liver transplant and he was so happy to see the progress Nathaniel’s made.

My next step is to find someone to teach me how to use the subway, since it takes longer for me to get my car out of the hotel’s valet service than it does to take the subway to the hospital. And that doesn’t count drive time.

OK actually my next step is paperwork for the long term disability folks but the subway thing is definitely going to happen.

5:06pm

Word is that Nathaniel has been given transfer orders, so he’ll be moving out of the ICU as soon as they can find him a bed. They’re also worried that his fungal infection may be associated with the stent in his new liver, so there’s a rumor he’ll be having that out soon. He’s not going back on dialysis until tomorrow at the earliest. Today, his OT team rolled him down the hall so he could see outside the room for a bit.  And Psych is going to take a close look at his meds and see what rearranging could be done. All good things!

11:04pm

OK so the stent is not coming out, the dialysis probably won’t be full-time unless his kidneys do something weird overnight, and he’s way way more coherent tonight than he was this morning. He also finally slept.

I’m exhausted but happy, and looking forward to another good day tomorrow.

One more note: The New York Times ran an opinion article called The People Holding Everyone Together Are Coming Apart (gift link) and as a full-time caregiver I can’t agree more. This job is exhausting, runs constantly, and doesn’t pay a plug nickel. We can do better, America.

11:38pm

The shenanigans that result from being delusional continued into the night last night, with Nathaniel ending up in special mittens at one point to prevent him from removing his IVs or his feeding tube or any of the other things that need to be attached to him right now. I read to him from 2am-4am, and that settled him down for a little while, but as soon as I stopped reading, he went back to the shenanigans.

By 7am I was done done done and despite all of the things in my head warning me that I should not be driving or for that matter walking, I managed to drive home and sleep in Pottstown for about 5 hours. Got a shower, ate some food, and made it back to the hospital in time for the back half of the football game. Nathaniel had at least lowered the intensity of the shenanigans by that point, so while I suspect that he would be mad as a wet hen that I left him in the hospital in that state, were he able to reason halfway clearly, I also suspect that were he able to reason all-the-way clearly he would’ve been glad I left.

I can’t say that the Eagles blowing a 21-0 lead against the Cowboys did anything for anyone’s mood, least of all mine.

After the game I packed up everything that was “anne sleeps here” type stuff and checked in to the Residence Inn across from City Hall for the next 38 days. I won’t be in the hotel every day — I still need to go home to do laundry and maintain the house — but this gives me somewhere to sleep where I can get away from 24 hour Nathaniel care. Because it’s not sustainable to sleep on the back of a sofa until he’s healthy enough to be discharged… and even then the hospital strongly recommends that we stay in town for a few weeks because he’ll still need almost daily appointments with the transplant docs.

It’s the first time I’ve “lived alone” since college.

The rest of this note next little bit is going to be about me.

When you’re neck-deep in alligators it’s really hard to figure out what you need. It turns out that asking for help is a skill that you have to develop and I did not.  I look around and think I don’t know, I’m up to my neck in alligators, I guess this is just how things are now. And every fiber of my Gen-X-white-girl-should-be-superman-“we don’t ask for help” being is shouting that even asking for help is something that shames me, my husband, and my family. I expect everyone to say “yeah, alligators, we’ve all got ’em, suck it up.”

So here’s me trying to be brave and say what we need.

1. Wawa gift cards.
2. Doordash gift cards.
3. Marriott gift cards.
4. People willing to spend a couple of hours sitting with Nathaniel so that I can go sit in the lobby and make phone calls or escape back to the hotel to talk to my counselor or whatever.  You have to be willing to do so even if he’s just lying there. You have to be willing to do so even if he’s delusional.
5. Someone who can come in and clean up his hair, beard, and nails. He’s been in the hospital for 6 weeks (48 days) exactly as of today and his hair and nails are getting a bit wild.
6. Someone to help me limit the time that I’m spending at the hospital. Bonus points if you’ve done this before. Help me figure out how to step away and not burn out even if “this is my job now” and “but I should always be there for him”  are true.

If you’re willing to come visit, please use the Visiting Nathaniel page to put it on the calendar.

If you’re willing to help in some of the other ways listed please check out How to Help.

Shout out to Nathaniel’s parents, who have visited as much as they’re able and also kept an eye on the house for us so that the bathroom remodelers can still get stuff done, etc.

Another shout out to the down-time slack crew who, any time i post “anyone want a side quest?” will hunt down printers, fans, glasses vendors, or any other oddities I need ASAP.

It’s after midnight so I’m going to take a shower and go to bed. I hope you all have peaceful nights not filled with alligators. We’re gonna get through this.

2:33am

Yesterday was… a lot.

One of the reasons why it’s hard to get anything done when you’re in the hospital (even as an observer/helper) is that the patient’s got a revolving door of people coming in to check on him from about 4am forward. And Nathaniel is, as the doctors all love to remind me, a complicated patient.

So they check his blood sugar like six times a day, and almost every one is followed by a shot of insulin. They pull blood cultures from two different sites once a day. They pull blood for other tests at least once a day. The ICU team does rounds up to three times a day. The transplant team stops by at least once a day. Nephrology/renal/kidneys (they keep introducing themselves differently) shows up at least once a day. Pulmonology rounds once, and the respiratory therapy techs come by three times a day for nebulizers and percussion. Physical therapy is coming around at least a couple times of week and working Nathaniel’s liver-wasted muscles.  Infectious disease has started showing up now that Nathaniel’s culturing a yeast infection in his blood.

And we owe that little yeast infection a lot, I think. If that little asshole had died during surgery, when all the patients are treated with an antifungal to prevent this scenario, then we wouldn’t have discovered that Nathaniel’s also having heart issues. So I guess we’re glad it was resistant to the meds?

The cardiologists believe that Nathaniel has broken heart syndrome , which usually strikes when someone has gone through a physically or emotionally stressful event. I want to stress here that *I* didn’t break his heart. His liver did. But generally the syndrome reverses itself over the course of about three months. So this is a bump in the road and not much more than that. Add cardiology on the list and more tests and more imaging.

Meanwhile the yeast infection is being treated with more powerful antifungals, thus all the blood tests.

Because yeast loves plastic, they had to pull Nathaniel’s central line, which means he’s not on dialysis right now. His body still isn’t producing enough urine to compensate for the extra fluids he’s still carrying around from the surgery, so he’ll be going back on dialysis in the morning. I’m not sure where the new line for the dialysis machine will go — someone mentioned the groin earlier — but i’m hoping it will be less of a stressor than having a bunch of tubes coming out of his neck did.

Near the end of the day I drove home and swapped out clothing and refilled medication bottles so I could come back for the weekend. I took some time to get some chores done that have been bothering me and I got a shower. So I’m clean and mostly warm and while the chores took longer than expected at least I got back here OK in the rain and the fog.

Since it is almost 3am I’m going to stop here and we can pick up with more adventures in the morning. Which is like an hour away now. Yay.

***
4:09pm

I don’t really have a good way to explain what it’s like when someone is having delusions. Sometimes it’s anxiety. We spent a good part of the morning discussing how he was worried about… well, everything. And not at the level of “I’m worried about the shenanigans the president is getting into” or “I’m worried about the impacts of global warming” more like “I’m worried that because I moved this cup from location A to location B an unknown assailant is going to drain our bank accounts.”

Imagine if you lived in a very small house with only one door and one window. Imagine if every person you saw through the door looked like a relative, but none of them would come in to say hello. Imagine if your window had been replaced with a one-way mirror and there were a dozen people in masks and gowns watching you through it. You’d be pretty upset! And that’s the problem with hallucinations and delusions — they feel exactly the same as real things at the time.

Plus they come and go. Sometimes the conversation is almost coherent. Sometimes it definitely is not. Sometimes he’ll string a set of words together like “I have to health tree purple bean” and I’m just like “I have no idea what you said, try again.” Other times he’ll sound absolutely with it, except for the part where the television is going to explode if the nurse opens a specific drawer in a cabinet.

Obviously, we’re not working in a vacuum of mental health care for all this, and the staff is both understanding and effective at implementing changes. There are medications for delusions and hallucinations. There are medications for anxiety. There are counseling sessions with psychologists that help to build skills during the times that the delusions aren’t coming. And all of those have helped, both Nathaniel and I, when things aren’t running the way we expect.

It’s still hard.

I could use a few days for both of us that weren’t hard.