A Rough Arrival And Why We’re Here

I was hyperventilating. I was crying. I was a hot mess coming in. Welcome to the Only Child Diaries Podcast. I'm your host, Tracy Wallace. Have you ever felt like you didn't receive the how-to brochure on life? That you didn't get enough guidance about major life issues? So did I. You don't have to be an only child to feel this way. In my podcast, we'll explore some of the best ways to better navigate adulthood while doing so with humor and light. Welcome everyone to the Only Child Diaries Podcast.

Rehab Progress Then Sudden Breathing Trouble

Today I'm gonna talk about our continuing journey at the hospital and Bill's ICU visit. Last week I didn't do an episode because frankly I was just over capacity. I had recorded an episode, but then things drastically changed. Bill was in the hospital in acute rehab, if you've been keeping up, and he was about ready to be discharged, which was great. He was going on 20 something days, and we were both looking forward to, along with our pets, to have him back home. He was doing PT for three hours a day, getting stronger, um, feeling good. That Thursday night, I left him and I said, How do you feel? And he said, I feel good. Well, everything changed overnight. Friday morning I heard that he had had trouble catching his breath, and so they put him on oxygen. The oxygen level in the rehab unit of the hospital is limited. Apparently, I'm not sure why, but it's limited. But um, they put him on oxygen uh and I went to see him and I could tell that he really felt miserable. I couldn't really explain it, but he just looked miserable. He felt miserable, he wanted to sleep. They had let him uh sleep in that day, and he wasn't interested in eating. I had noticed uh several days before that his ankles had mildly started to swell. And I know from our visits with our nephrologist that that meant something. I wasn't exactly sure what it meant, but I knew that it meant something because every time we would go see him or have a video visit, he would ask us, Are your ankles swollen? So I figured it had something to do with Bill's kidney function. Sometimes it has something to do with your heart, yes, but in this scenario, I figured it had something to do with the kidney function. Now, I want to just say that none of what I'm gonna tell you should be construed as medical advice or medical opinion or medical knowledge as a doctor, because that's not who I am. I just I do know a lot about his medical condition and the details, but let's not take that as advice. Okay? I had mentioned the swollen ankles to the rehab staff, but they didn't really know what to say about that. They just kind of took it in and they said, okay. Anyway, the next day, Saturday, Bill's breathing had gotten worse and he was still having trouble, so they moved him to a regular hospital room within the facility. They told me that this meant that he would be able to get a greater concentration of oxygen, and of course, he'd be able to get antibiotics, which in the rehab unit they're kind of limited by what they're able to do. I mean, they have nurses and doctors, but it's a different kind of a unit, right? So we moved over and he got uh he also got a lung scan. Um, the staff was really great. They started him on antibiotics, and I could tell that he was pretty sick. He still wasn't interested in eating, and he wasn't that interested in drinking fluids either. That's one thing with his fragile kidneys, is that he's supposed to hydrate. Well, I was concerned, but not fully hysterical yet and disappointed. I think we were both disappointed that this was a new chapter and that he wasn't coming home after all. Um, but they did they had talked about actually ordering oxygen for home before he got really bad, which I was like, really? I I don't think he should come home like this, even though of course I wanted him to. Sunday, he felt better. The antibiotics had started to kick in. He wanted to eat again, so that was great. And although he felt tired, which is normal with pneumonia and everything else that had gone on, he he was brighter, he was talking. Um, I left Sunday night and I felt pretty confident that things were moving in the right direction.

The ICU Call And Intubation Shock

Well, Monday morning, the doctors called me and they said that his breathing had really deteriorated overnight and they were gonna move him to the ICU so that he could get a higher concentration of oxygen with a CPAP machine putting a mask over him. And they said if that didn't help get him up to a good level, that they were gonna have to innovate him and sedate him. Well, this was fairly upsetting. I mean, now we were going into a different direction, a bad direction. So usually what I have been doing is staying at home in the morning, giving our cat his insulin shot around one o'clock, and then heading over to the hospital. But what I did that day was I, you know, got going, I went over so that I could hopefully be there and see him, uh, and then come back to the house to give the shot. Well, I didn't make it. By the time I got there, he was already sedated. I left trying to get to the hospital to see him, and the doctors called and said that his breathing had deteriorated enough that they did have to sedate him and intubate him right now. It was very upsetting, needless to say. I parked, I went through the security checkpoint, I got to the registration desk to get my ID badge, and I was hyperventilating, I was crying, I was a hot mess coming in, and when I got to the registration desk, they said, Um, do you want a volunteer to help you uh, you know, escort you up to the ICU? And I said, Yes. And so I got up there, but they had already sedated him. Uh so I couldn't, I couldn't see him. So I sat in the little waiting room there, and the doctor came out to see me, and he he was, you know, the ICU doctor was um, you know, efficient and calm. I'll say he had a little bit of an ego, I noticed, through our um through our stay. And he just said, you know, we're we're getting him what he needs, and uh we'll go from there. And of course, that just wasn't good enough for me. I was still hysterical in a calm way, but I was hysterical because I mean this is pneumonia, and it's pneumonia that he can't breathe uh with, and on top of that, he's a type one diabetic and he has all these other conditions, and my my mind goes to a different place, right? I always uh think about all the possibilities, and on top of that is the fact that my dad had presented with pneumonia, and that's how they discovered that he had lung cancer. So I was there are triggers all over the place for me. And I texted my friend, Lena, and I told her what was going on, and she just said, I'm on my way. And I thank God because I'm an only child and I'm used to being by myself and I can handle things by myself, but I was pretty much a wreck on Monday. I was as much of a wreck as you could possibly be because I I really thought I was gonna lose him, and uh, you know, that was that was a tough day. That was a really tough day. So I I couldn't see him um for a while because they had to fix him up, or fix him up, that's funny.

Seeing Him Sedated And Staying Present

They had to make him presentable, that's what they said to me, because they had um he had regurgitated food out of his stomach, he had probably messed himself. It was, you know, God bless the ICU nerd ICU nurses because they did such a great job with him. But when I finally went in to see him, it's a lot to see your loved one covered in tubes, coming out of every possible part of his body with the breathing machine. Um, the nurses were great. They're explaining things to me, answering my questions. And then, because he was on uh fentanyl for pain and propofol for sedation, they woke him up every couple hours to make sure that he was still neurologically intact. This is a thing. So they woke him up for a few seconds. He opened his eyes, I went over, you know, and I hovered over him so he could see me because he couldn't, you know, really bend his head or anything with this tube in his throat. And he saw me and he started crying, and I was just trying to hold it together and he was trying to mouth the words, I love you, and I told him I loved him, and my heart was breaking. Um, and I just told him that he was gonna be okay and just to relax and take it easy, and then they put him under again. They asked him if he was in pain, he nodded yes, and they put him under again. So and then I really lost it, you know. But uh I would sit there with him and I would talk to him, even under sedation. I know that he could hear me. He could, you know, maybe not remember what I said, but he could hear my voice, and I felt like that was important. I remember when my friend Gina, after she was diagnosed with the brain cancer, and they had sedated her after her surgery, but they hooked her up to a brain monitor, and I would go in and I would talk to her. The the um indicator lights or the indicator on the monitor would show that she had brain activity. And so I know that me talking to him was getting through, the noise was getting through. So I would do that. I would just tell him that he was gonna recover, that he was doing great, that I was so proud of him, that um he was gonna come home soon. But it's a tough day. It was a really tough day. Um and trying to tell the people that mattered the most. I didn't have the bandwidth to tell a lot of people. I I called his sister, his brother had to go to work. Um, he ended up getting vertigo after work and he couldn't come over. He was so uh sick from that. So it was a bad day all around. Um, Tuesday was the same thing, you know. And I have to say that when I was coming into the hospital the first time and I was hysterical, one of the security guards looked at me and he said, I'm so sorry. And I said, you know, they're there's they're put he's in the ICU, and he said, I'll pray for him. And I'm not a big prayer person, I'm not a big religious person. I do believe in the universe and the goodness of the universe, but I mean, I I prayed for my husband, but I was very grateful for this man who didn't know us, and uh Hassan was his name, and very sweet. So many, so many kind people. So anyway, the next day was pretty much the same.

Dialysis Decisions And When Ports Fail

No changes, but they said he was doing better because they could reduce the level of oxygen. Um, they took fluid out of both lungs, but at the same time, his kidney function was deteriorating, which is there's always something new to worry about, right? Um, and then Wednesday, well, so they said they were gonna do dialysis, and and for Bill, and for me, but for Bill, dialysis has always been the thing that he didn't want. We've worked really hard to keep his kidneys strong, uh, to hold on to that last bit of ground that we've had, and we've done so well with that. And for whatever reason, though, his body, his whole body, was holding on to fluid, not just his lungs. And so they did some things to to work on that, but they asked me, Do we have your permission to do dialysis? And it's probably only temporary. And he was sedated, and I said, Yes, because uh, you know, that could help save his life. And so they put a catheter, the the dialysis, I call it a catheter. I'm not sure that's the right word. Maybe it's support. They put it in your jugular vein and your neck. My mom had the same thing when she was um in the hospital uh towards the end, and they put it in your neck, and that's where they do the dialysis from. And so the first session, the guy came with the machine and they started the dialysis and they got through, they were gonna do two hours worth. Well, after an hour and 15 minutes, the port clogged. And they worked very hard to unclog it, but they couldn't. And the ICU doctor came, she worked on it for a while, and in the end they had to pull it out because it wasn't it wasn't working. So the next day they tried it again on the other side, and they um they got to 15 minutes and that one clogged. And I had asked the dialysis guy that was there, I said, Does this ever happen? And he goes, No. And so the daytime ICU doctor who had put it in, he came. I asked him, has this ever happened to you? And he said, No. He had told me on the phone that morning he said, I could have fixed the one the day before. I could have fixed it. Well, he came to try to fix the other one. He couldn't fix it. And he looked, because Bill had a catheter in, he looked at the bag of urine and he said, He's peeing anyway, let's just pull it out. Well, they did try to fix it some more, but it just in the end they had to pull it out. So Bill got what an hour and a half of dialysis.

Waking Up With The Tube In

And then Wednesday afternoon, I was sitting there with him and the nurse came in and she said, We're gonna wake him up now. And I was like, really? Because they had been able to gradually reduce the amount of oxygen that he was needing, which was great. Um so they have to stop the sedation, but leave the tube in your throat. They have to leave you inundated. And then what happens is after about half an hour, when you're more awake, because you do come out of it, but then you're kind of groggy, then they start, they start reducing the oxygen that the machine is giving you until you're just breathing on your own, and they do that for about a half an hour, and they make sure that your oxygenation level is okay, and you're doing that on your own, and then they pull the tube out. Bill has never been claustrophobic. I'm not sure that he is now, but it was a hard thing to watch um to have you know him there and regaining consciousness and have this tube in his throat. It's very uncomfortable, let alone having it pushing air into you. Um, but I held on to him, I held his hand, which I found out later was sore because of all the IVs and the extra fluid, but anyway, um, couldn't tell me that. And I played music for him on my phone, and I just talked to him and I told him how proud I was of him. And then finally they were able to pull the tube out. And we were there by ourselves. It was just me then at that time. His brother walked in right when they were gonna pull the tube out, so it was good timing for him. But that was a really hard thing to watch, too. I I and I think if, you know, if I ever got to that point, I'd I don't think I'd want to have that. I I mean there's there's all sorts of things that they could do to save your life, but um oh my gosh, I'd really have to I'd be I'd be panicking. Um it's a horrible, it's a horrible thing to even imagine going through that. He was good that night. They they just let him have a little bit of liquid by mouth. His throat's obviously very sore. Um they gave him some liquids. And then uh the next day, was it the next

Back To A Regular Room

day? Yes, the next evening, they transferred him to a regular room because he was breathing on his own enough. Um they were gonna let him pee on his own. They took the catheter out, and the doctor said uh yesterday, um Friday, that he doesn't need dialysis because his kidneys are stable. And I'll say this that the function hasn't returned, at least the lab work hasn't returned to the level that it was before he got sick. It came back a little bit last night, but he said it just takes time and he's hoping that it will um, you know, get back to that place. But he's still peeing and Um you know, but is he is he back to you know no, he's not. He's he's qu he's been quiet. He hasn't really wanted to talk very much, but when he does, he still cracks jokes. Um they're very they're very quiet jokes, they're very subtle jokes, but he is able to he does still have his sense of humor, and for that I'm very grateful. And then yesterday they started him on solid food, which I think was great because it's been like what four or five days since he actually ate anything, so I think that that's gonna help him to feel better too. I know he's exhausted from the whole ordeal, and I mean, how much can you sleep in a hospital? But it's I think this is day 32 that I'm recording this. So by the time the episode comes out, it'll be day 35, and I and I know he's gonna be in the hospital still for a while. I'm really hoping that he can get up and start walking and that they'll send him home because if they send us back to rehab, oh, give me strength, because obviously he is weaker, um, but he just needs to come home. He needs to be in a a non-hospital setting. Um, it's been a long road for us. The new the nursing staff has been tremendous, so he's still getting some treatment. His blood pressure issue, which is what we started with in the beginning, his blood pressure is pretty much back to normal levels that I can tell. The readings that I've seen when I've been there, um he's uh he's not on an insulin pump anymore. Obviously, he wasn't gonna be able to manage that uh when he was sedated. So they put him on an insulin drip in the ICU, and now he's on shots, which is not optimal either for him. But uh, you know, we've got to wait for the transitions. So all in all, it's been a week. Uh it's been a week. Let me just say that.

The Truth About Caregiver Self Care

I also want to say that a lot of people have said, You've Tracy, you've got to take care of yourself. And um and well-meaning as much as that is, I get it. I mean, am I taking care of myself? Yeah, I mean, I sleep every day. Um, a lot of the nurses had asked, are you staying overnight? It's like, no, I'm not staying in the hospital. First of all, I wouldn't get any sleep. Second of all, our pets are at home and they need they need somebody. They need me. They need to have food. They need to have their scuttles. Bubby needs to have his medication. I need my bed. Um, I need to wake up in a place where I can watch TV and kind of decompress, right? Um, I'm eating every day. I can tell you I'm very sick of hospital cafeterias. I mean, very sick of hospital cafeterias. I was in line the other day for the sandwich bar because this hospital, if you get there a certain time, they'll make they'll make your sandwich to your specifications, which is nice. It's something. They don't have everything that I'd want. It's not like a uh a Jersey mics or a subway thing, but it's it's okay. And the guy said, well, we've got the grill. I said, I've we've been here three weeks. I've I've done I'm done with the grill. And they have pizza, but you know, I'm just I'm done with the I'm done with the hospital food. I've tried, but I have. I've eaten every day. I try to hydrate as much as I can. I um, you know, I haven't needed as much caffeine as you might think I've needed. But I was uh when I got to the when I got to the ICU on uh Wednesday, I was trying to find the nurse to ask how he was doing, and the charge nurse came up to me. She said, Well, is there anything I can do to help you? And I said, No, I was just asking how my husband's doing. And she said, Well, now remember, she said it just like this, now remember, you've got to take care of yourself. And then she got really close and like she really looked in my eyes, like it was like like eye contact, like like extraordinary, right? Like, and I was like, Yeah, I hear you. I want to say, I hear you, bitch, but no, I didn't say that. No, but um, you know, there's only there's only so much that you can do to take care of yourself when you think that your spouse may not make it. I mean, sleeping is challenging when you're worried, right? That that night when he was first in the ICU, I was like, I'm not gonna be able to sleep. But I tried and I did, and I got six hours, and I really had to, I really had to put in the effort, but I did. I slept. I've slept every night. It's not always been great, but I've slept every night. I've really tried to focus on that. And like I said, I've eaten, I've drunk fluids, I've I haven't run into a tree yet with my car. There's certain things that I need to do around the house, like water because it's blazing hot outside, but there's other things. Um like the laundry's piling up, and what am I supposed to do? Go get a massage and a facial and get my hair done. No, I don't feel like doing extra stuff for myself, like go on a vacation. Oh, I I think I'll just go to Vegas for a few days, right? Like, I don't I need to do the basics, and I'm doing the basics. So, like, don't get hysterical with me. Um, and I've also been working uh, you know, some every day. Um not not a lot, but I have been keeping up with things that I had to keep up with, so you know, give me a break. Um but I know it's all well-meaning and it's in my best interest, but um yeah. When you go through these things, there's just it's a delicate balance for sure. And it's um it's it this is a marathon, it's not a sprint. And I recognize that early on, that it's about balancing out what I do at home and how much time I spend at the hospital. Because you go and you sit there, and there's not much you can do. I mean, you can sit around and wait for a doctor to come, but most of them come in the morning, so I miss them. And I can look at the labs, and if he's gonna sleep, I mean it's just important that he sees me every day, and we get to talk a little bit, and I get to support him and cheer him on and see if he's better. Um, because he's my guy and I love him a lot, and I gotta make sure he's good. So, anyway, uh that's all I've got for this week. Next week, I'm hoping I'm gonna have better news for everybody. Uh, and yes, we'll tackle that topic together. I hope you'll

Next Steps And How To Support

join me. If you like this episode, please follow the Only Child Diaries Podcast on Apple Podcasts or other platforms you might listen on. And consider rating Only Child Diaries and writing a review. It helps others to find us. Please share it with a friend you think might like it as well. Visit my Instagram page, Only Child Diaries, or Facebook, Only Child Diaries Podcast. Thanks for listening. I'm Tracy Wallace, and these are the Only Child Diaries.