Couldn't manage an update yesterday, but he was doing much better. I spoke to him first thing in the morning, and he'd slept well and was feeling a lot better. The day before, when they put him back in the ICU/PCU ("PCU" = Progressive Care Unit, a step below ICU), was a brutal day.
But back to yesterday (with some "day before" sprinkled in for context)...
First thing in the morning, I had some stuff to do with the GoFundMe account a friend and colleague of his started within hours of learning about the current situation. He'd sent Biff a short script to consider, and Biff had to let him know why he could not. The response has been overwhelming, and although I'm extremely grateful, I have to admit I feel weird about it. But I won't lie and suggest we couldn't use some extra money for all the expenses, medical bills (although his insurance is generally really good, our share of costs adds up when there is so much going on - we have no idea what he'll be charged for ICU stays yet), so I'm trying to just be practical. If you would like to share the campaign or read more about it (but please don't feel obligated to contribute!!), here's the link:
He also asked me to make up a quick little sign to show his support for the WGA Strike, so we could take a picture, and he could post. Here's how that came out:
We did a good job of hiding the gnarly bruise on his chin from the fall last Thursday. Here's a picture of that. You can also get a sense of how his mouth sores leave bloody mucus in his mouth - he had a suction tube handy all day yesterday to pull that yucky stuff out whenever he felt the need:
So, I had those "assignments" and taking a shower before I could head back to the hospital. He made a big point of insisting I must take a shower first (I'd brought it up & he just kept teasing me "Please take a shower!" - that's my guy!).
But, of course, hurrying to get myself ready when my mind is racing and scrambled trying to keep up with things - and life just loves to play its little jokes - a couple "funny" things happened. First, three of our smoke alarms went off while I was in the shower. I leave the door open because I get too hot, and the steam has set off an alarm before... But THREE!!! As soon as I could get out of the shower, I got the stepping stool to check the hall alarm, but it wasn't that one. The alarms had gone off in the two main bedrooms and Biff's office at the end of the hall! Poor dogs didn't know what the hell was going on. Oh, and I couldn't find my phone for a frantic 10 minutes or so as I was trying to head out the door... Finally found it. In my back pocket... Yeesh. Think I'd gotten a little wound up. 😜
Regardless, it was great to get to the hospital and find him in much better spirits. Where he'd barely been able to keep his eyes open the day before, yesterday he was awake, alert, and chatty!
The doctors had already done their rounds before I got there, so initially Biff explained a couple things. One, they were still concerned about his urine output (or lack thereof) and that they weren't leaving the catheter in due to his low White Blood Cell count. Two, they are going to do a PGx test (he handed me a pamphlet), which is a genetics test to help them figure out what may be causing the severe reaction he's had to the chemo and decide which chemo options may do better. Not sure how quickly we'll get those results - the pamphlet said it could take up to two weeks, but Biff is under the impression that's just when it'll get posted to his records. He believes he and Oncology will be notified sooner than that.
I did not have a chance to talk to the Oncology doctor yesterday, although the doctor on Biff's case yesterday said she'd send him a note that I was asking. Not sure she remembered to do that - our Oncologist is usually pretty quick about getting back to us, and I didn't hear yesterday. Of course, it was first day back after a holiday weekend, and I'm sure he was swamped. I'm going to try sending him a note today. If nothing else, I want to find out the immediate plans for going forward with the next chemo treatment scheduled for Monday.
I did have a great update from the doctor covering Biff yesterday though. She explained a lot:
1. His respiration is doing much better, and they had shifted him to a lower flow of oxygen.
They did do another "breathing treatment" yesterday, which they had also done the day before. Here's a little video of that I shot the day before:
2. They increased his pain medication regimen, giving him Dilaudin (or Dilaudid - not sure I have the spelling correct) every four hours. However, this medication can contribute to urine retention, so they were proceeding with caution. Since he did not complain of pain during the six or so hours I was there, I'm not sure they gave him any - although I did not ask exactly what each medication they gave him was as they were administered. I asked a lot of questions yesterday and sometimes felt like I was getting in the way, so let it be. Maybe that was wrong, but I try to find a balance between demanding and befriending, you know?
3. They had him on a broad-spectrum antibiotic, but they had narrowed that down to one antibiotic. They were still looking for bacteria in his lungs, but the UTI (urinary tract infection) was diagnosed, so working on that!
4. He was on Day 2 of a 5-day course of Neupogen (they spelled it for me), which is basically synthetic white blood cells. The doctor explained that a normal white blood cell count is between 4 - 11, and that should increase to 14 or 15 if they are sick and fighting infection. Biff's count was .9 (point 9)!!!!! Obviously way too low, so working on that!!!
The day before yesterday (the really bad day), they had him continuously hooked to a Condom Catheter (external catheter), but that didn't produce any urine output. So, twice during the day while I was there, they'd had to come in, remove the Condom Catheter (which, especially due to the nasty rash down there, was extremely painful), insert a Urinary Catheter (even more painful), wait to get all the urine backed up in his bladder out, then remove the Urinary Catheter (pain again), and put the Condom Catheter back in place (also painful)... It was pretty horrible, and so painful for him. But he wasn't in a condition that allowed them to leave the Urinary Catheter in place continuously - I learned the next day (yesterday) that was due to the low white blood cell count.
Less than an hour after I first spoke with the doctor about all this yesterday, she came back to advise that the latest test showed his white blood cell count had risen to 2.3, which they considered a dramatic improvement, and were going to proceed with putting a Foley Catheter in. The Foley is a more flexible tube and more comfortable, apparently, than the Urinary Catheter. It took a few hours before they got that installed, but it's all set. It was a painful "application," and initially was not comfortable, but he did get used to it, as they had promised. And urine definitely flowed!
Another indication Biff was feeling better yesterday than the day before: he made me leave the room while they installed the new catheter! He didn't even remember I'd been there, literally holding his hand, through the two torture sessions the day before - but now he "didn't want me to get in the way." Yeah, okay. (Funny story though: while I waited outside the room, I had a conversation with the Assistant Nurse, who asked if we were married, etc. She also asked if I worked in medicine!!!?!?! I had to laugh and explained, no, I just take a lot of notes and ask a lot of questions. LOL)
5. They also have him on anti-seizure medications as a preventative due to the fall - as I understand it, this is pretty standard with someone who's had a head injury, even when they aren't concerned about urgent surgical needs, especially if they are still dealing with other issues.
6. They currently didn't feel he was safe to swallow much of anything. They now had him only allowed to take an ice chip on his own, not even a sip of water. And no food at all, not allowed to even try pureed/soft food. They were having him swallow some of his regular meds, crushed into apple sauce (apparently apple sauce or something a little thicker is actually easier to swallow than straight liquid!?!), and then he was still doing rinse/spit medications, which burn and cause his mouth to bleed. For the first time yesterday, they had a suction tube with him in the bed, that he used whenever he felt the need. Which got pretty gross and had to be replaced periodically. Ugh. But better than him trying to spit out or wipe out his mouth when the bloody mucus got to be too much.
She advised that they were planning to do a Barium Swallow test (he'd drink the Barium in front of x-ray so they could see his swallow function) today. Once they'd done that test, they'd make a decision about the various feeding tube options, possibly even intravenous nutrition instead. A whole SLP team had come to consult before I got there (Swallow Language Pathology).
Jumping ahead to today, Biff called to advise the SLP team was back and checked him out, and they've decided he's not ready for the Barium test yet. Hopefully tomorrow. For now, however, that means he'll definitely not be moved out of the ICU/PCU today, which had been a possibility.
They generally believe his GI system is okay, and they really hope they won't need to go to the feeding tube at all. I'll find out more about this when I get back to the hospital in a little bit, and I can talk to the doctor for a full update.
As anticipated, a whole lot more information started flowing after the holiday weekend was over. There's even more, but the important stuff is covered above.
Biff texted me about 7:15am to let me know he was awake and doing okay. A couple text exchanges. He said he'd slept pretty well.
Then he called about 8:15am to chat and advised they'd told him they thought he would be moved out of ICU/PCU today! That got me rushing, but I had to take care of some stuff at home before I could head back to the hospital...
Then he called again at about 9:20am, and he wasn't doing as well now. The medications were really hurting his mouth. And the SLP team had come back, forcing him to do some swallowing for them, and ultimately deciding he isn't ready for the Barium test or to move out of the ICU/PCU today after all.
So he was going to try to just rest for a bit. Told me not to rush getting there.
Decided I'd get this update written and posted before I head down there. Gives me a little more to hang with the dogs, who are definitely missing having Biff home and not happy having me gone so much either. And get a couple other things done here at the house - maybe even get over to the pharmacy to pick up a couple prescriptions for me, although I still have a few days left before I'm out, so we'll see. I'll also get to hold off on the drive until after the rush hour traffic clears.
I'll try to post another update later today, but it might be tomorrow before I can manage it. I'm unbelievably exhausted by the time I get home. The stress takes a toll. And time is just weird for me: stretches and shrinks. Hard for me to get a firm grasp, hard to organize a schedule. Hell, it's just a hard time all around.
Thanks again to everyone for all the love and support. He doesn't have the energy to reply to all comments and texts and things right now, but he's amazed by the outpouring on social media and the GoFundMe campaign. Yesterday, he'd check Instagram and show me how many "Hearts" had tallied since he last looked. 100! He'd check them out, clear the count, and it would be back up at 100 or something the next time he looked! Amazing. (And the plan is to make responding a project once he's in better shape!)
We also got a chance to watch the first few episodes of the new season of I Think You Should Leave with Tim Robinson together on my laptop. His stuff wasn't in the episodes we saw. I made sure he could watch more on his tablet before I left last night, but I'm not sure he had the energy. He was definitely fading a bit when I left, so I imagine he mostly slept. So, maybe we'll watch more today!
And the battle continues. He is fighting hard to recover, to be able to move forward. And I feel like things are finally starting to head that direction. Onward we go.
(Apologies - I know I should edit this down more, but I just don't have the time today.)
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