Welcome And Why This Podcast

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.

Day 45 Takes A Turn

Today, I'm gonna continue the story of my husband's hospitalization and tell you about really taking care of your loved one because day forty-five was yet another pivot in our well, in his health journey. Now, what happened last week was that Bill looked like he was starting to recover from pneumonia. He had had his second round of thoracentesis, that's the plural form, uh thoracentes, I don't not sure, uh, both lungs, draining both lungs, getting fluid out. So he was breathing better. And so Monday, uh what was slightly different though, about the weekend was one of his or both of his legs, the lower legs were starting to swell again. We've had these these balances of fluid. Um, and so they did an ultrasound on his legs.

Ultrasound Finds A Blood Clot

And unfortunately, yet another shoe dropped on Monday. Um, I was having a great uh working relationship with his nurse that day, and uh, although she wasn't supposed to tell me, I asked her the results of the ultrasound, and she told me that they had found a blood clot in one of his calves. And so I I told Bill Um I had gone over there early so that I could try to see the doctors. If you if you don't get there in the morning, you don't see a doctor. Um and so I had gone over in the morning. I had to come back to give the cat his insulin shot, and then I went back again, so it was a long day, but I was going back and forth with the nurse and asking her questions because I really didn't get that much interaction with the doctors. And uh Monday was um the last day for the hospitalist or the admitting doctor that we had been working with all week. And I had had several conversations with her. Um, so she came by and I did get to meet her finally in person, and she seemed like she was okay. I mean, she uh she had talked to me several times on the phone, and we had decent conversations. And so she came by, she saw his legs, she ordered the ultrasound. And so then at the end of the day, she called me and she told me about the blood clot. I didn't bust the nurse, I didn't tell her that I knew. And so I asked what they were gonna do and what the plan was, and she went through some of the treatment options, if you will. And what she really pushed for was something called an IVC filter, which is something they put in, um, it's like an angiogram, they put it in the groin under a local anesthetic, and it prevents the clot from moving up to the lungs. She didn't think that blood thinners, um, like heavy blood thinners, was the way to go.

Fighting For Insulin Pump Control

And obviously doing nothing because Bill's not very mobile yet was the was the other option. Now, one of the reasons that I went over in the morning was also to try to um catch the endocrinologist because over the weekend Bill's blood sugars had been pretty high, um, over 300. And the endocrinologist uh and the and the team was still managing his glucose, and they weren't doing a very good job of it. And we had asked if he could have his pump back, but we were told that the endocrinologist was off on the weekend, and she was the one that could make that determination. Huh. So that wasn't a very good answer in my book, especially since the week before he had been in diabetic ketoacidosis or DKA, and he had had to go back into the ICU to get an insulin drip. So the doctor was supposed to be back on Monday, and I really wanted to be there to help my husband advocate for the pump. Um and I was again, I was working with the nurse who kept messaging her and messaging the team, and there was no response, right? And they wanted to give him Lantis, which is a long-acting insulin. Um, but if you're gonna go back on the pump, you're only gonna be on a short-acting insulin. So we declined the Lantis because we were hopeful that we could be back on the pump. Well, what happened was at the end of the day, we heard that he could go back on the pump, and they still wanted to inject him with another insulin, and uh his blood sugar was still high. And so I finally texted our endocrinologist. I texted her, um, and this is a doctor who is well known nationally, if not internationally. She's incredibly busy, and she got back to me within like 10 minutes, and she was in clinic, she was seeing patients that day, right? So here comes the hospital's endocrinologist. Now, when we were back in the ICU for DKA, she had come in to see us for a few minutes, and really she had the audacity to look at Bill and say, You need to be your own advocate. I really, really wanted to kick her in the shins at that point because she was very uh egotistical and she really didn't have a clue. Well, she came up to the hospital floor at the end of the day after we had you know got got the pump started, after our doctor had gotten back to us within five or ten minutes, and she said, Well, I gave the order to resume the pump this morning. It's not my fault if the nursing staff didn't tell you until 4 30. And I just I went off on her, and because she was saying I was in clinic all day, I said, Look, with all due respect, our endocrinologist, I mean, she's at another hospital, okay? Our endocrinologist is in clinic too, and I texted her and she got back to me within 10 minutes. So your excuse doesn't fly. And we didn't hear about it until 4:30. So she says, Well, that's not my fault. And I said, You told us in the ICU, you came in and you said, You need to advocate for yourself. I said, I'm we're we're advocating for ourselves. I mean, we really had it out, and we were at the nursing station, and you know, you I could see people kind of trying to absorb themselves into the walls. They were walking away. I mean, when I go rogue on somebody, you don't really want to be around. Um, and our neighbor John was walking up this long hallway to come visit us, and he could see that, you know, I was very animated when I was talking to her, and he was like, I know, I knew something was going on. Anyway, uh that night she signed herself off on the case, and Bill got himself back on the pump, and by the next morning, his glucose was down at a normal level. So thank you very much.

IVC Filter Versus Blood Thinners

Okay, so so that night the admitting doctor told us what she thought was the best route to take care of this blood clot. Well, her first choice was this filter procedure. But the next day, uh she had one week on, one week off. Okay. So the next day, it was a different doctor on for the week. And I asked to talk to him because I I don't think I'd ever talk to him. And he called and he said the filter procedure wouldn't be the best route for Bill. And I was like, okay. He said, because you have to put it in, you have to take it out. Most people don't take it out. It's you know, it's really a procedure of, I think he said last resort. I didn't really understand that. So he said the blood thinner drip or the blood thinner shots would be better. My friend who's a nurse was like, Why aren't they doing a drip? I didn't understand. Okay, so this was Tuesday now. Um, so I was sitting there with him in the afternoon, and the pulmonologist comes in. And the pulmonologist seemed like a really good guy. I do have to say that, because he was looking at Bill for his lungs and talking about what was happening with his lungs and the fluid and all that stuff in his breathing. Very important in this whole scenario. And so he was talking about the blood clot, which I thought was kind of weird because he's a pulmonologist, but I'm sure he can appreciate and be very interested in blood clots because they can go to the lungs. So he was telling us that heparin, uh, because heparin is usually what they can use for blood clots. Sometimes they use something called Lovinox for blood clots, but he said they wouldn't use Lovinox because it's not good for kidneys, and Bill has fragile kidneys. So he said he was going to go in and go back and put the order in for the heparin. Well, about a half an hour later, he came back and he said, Oh, well, I see that they already gave him a dose of the Lovinox, but they gave him a half dose, so it should be okay for his kidneys. This is when I took a really deep sigh, and I started to feel like I was watching some sort of um episode of

Conflicting Plans And Nephrology Concerns

Benny Hill or something or whack-a-mole. Like, who is in charge and what is the plan? And is there one plan and where is the nephrologist in all this? Right? So, being the concerned spouse that I am, something about it was just not really gelling with me. And so I did write the nephrologist at Cedars. And in the past, I I had checked in with him a couple times. A lot of this didn't make sense to me, right? There were conflicting stories, conflicting opinions between the doctors. So I started to get kind of nervous that maybe the plan wasn't as solid as it should be. Um anyway, I I did write our nephrologist, and in the past he said that he said, I see that Bill is really sick or um something. But this time he said, I can't really comment on the treatment by other doctors, but I would prefer that Bill was under my care. And I think that that was pretty clear for me that he didn't agree with the treatment. And I think that there's a fine line sometimes, depending on your health status, right? So a hospital like the one we were in would be fine maybe for somebody like me, who doesn't have a lot of chronic conditions, has something kind of simple and straightforward. But for somebody like my husband, a lot of things are tenuous and they need to be juggled and they need to be really cared for carefully. So it would have been okay um if if I had checked in with him that day, uh, because the day before he felt he felt good. I called him, he said, I feel stronger, I ate because his appetite has not been there. Um, but I called him and he said, I don't feel good, I feel really weak. Um, I want you here. And so I rushed over because I mean I could hear it. I could hear the fear in his

Pushed Toward Skilled Nursing

voice. And at the same time, let me tell you, that day they were coming in and talking to him about moving to skilled nursing. Again, back at the same place. We've been in the hospital, you've been treating us, you haven't really solved the problem, and yet you want to send us to skilled nursing. And to me, that doesn't really make any sense. So, on one end, I have a husband who doesn't feel good, I have a case manager who's pushing to move us out of the hospital, I have doctors who don't um agree really with the treatment, getting conflicting opinions, conflicting advice, conflicting protocols. And I have our doctor who's saying I'd rather that he be under my care. I mean, how much more clear can it be? So I, you know, I was still here at the house. I was trying to get ready, and I just I just realized that he needed to go back to Cedars. Now, this is a big deal. Moving to another hospital is a big deal. And so I called my friend, uh, my nurse friend, and I said, Look, am I out of line here? And she said, Absolutely not. I said, Okay.

Choosing A Cedars Transfer

You know, in my head, this is the plan, this is what we're gonna do. I called the case manager. Of course, I didn't get her. I left a message. I said, We want to go to Cedars. So I go over to the hospital, I talk to my husband. Um, is this okay? Do you want to? Yes. He he was totally on board with it. He wanted to go. Um, does he want to be in the hospital for any longer? No. Talk to the nurse. Um, she said the case manager's in a meeting until 3:30. It was like two o'clock. So we wait. And then finally she comes in. And I get it. You know, I I do. But but when you're trying to transfer out of a hospital, I don't know what it is, but they don't really want you, first of all, to transfer. Sure, they wanted to transfer us to skilled nursing, but there's just something in the system that says, no, we don't want you to go. So I told her, I said, look, we we want we want to go to Cedars. You know, she stood in front of me, and she said, Well, it's the same level of care. And I disagreed with her on that because it's not. Um, and she said, Well, you can't go to Cedars because they don't have a bed. I said, They never have a bed. You have to just go. Um, and whatever I said to her, she just looked at me blankly. It was like talking to a telephone pole, really. Um and so, but I knew that if Bill stayed there, it it just it wasn't gonna be good, it wasn't gonna work out. So the only option really was to you know, order our own transport, our own medical transport, and to go through the ER. And there's this company that I had used before, called them. They had a slot open up that was in about an hour from that time. And I told I told the nurse

Leaving Against Medical Advice

and I told the case manager that that's what we were gonna do. And they said, Well, you're gonna be taking them against medical advice. And I said, That's fine. That doesn't scare me, it doesn't scare us. So you have to sign this paper that you waive all your rights and you absolve them of all liability, um, which is, you know, whatever, uh, and that you are leaving against medical advice. Okay, it's whatever. Okay, fine. So we sign that, and then I asked if we could have a list of the medications that he's been taking. Uh, and they said, no, you can't have that. No, because you're going against medical advice. So that to me seems really like crappy against the Hippocratical Oath. Um, but that's the way it is. They just, you know, you want to leave. It's like it's like you've divorced somebody, and no, you can't take the dog. Uh, I'm holding on to the dog. I I I just whatever. So, I mean, it's the same portal uh for the other for Cedars, but it it still it it just

New Tests New Clots Real Progress

it sucks. So the transport showed up. They got Bill on the Gurney, they put him in the truck, they had oxygen for him because he still needed oxygen, um, and packed up all of our stuff and drove over to Cedars, and he was able to stay, and they had a bed within an hour, so he was in an air-conditioned van and it was fine. He didn't get sick to his stomach, and that worked out great. Bill got a room the next afternoon, early afternoon, and they did a whole bunch of tests on him, and surprise, they found another blood clot in his arm because he had been complaining of a lot of pain in his right arm. And uh yeah, so he's a blood clot in his arm, and I think he might have a blood clot in his neck, too. Again, they were ready to discharge him to skilled nursing. They also did another round of the thoracentesis this weekend. They did they pulled out fluid from both lungs, and yesterday for the first time, he was able to sit up without um oxygen, he didn't need oxygen. So I think that's um that's progress. Now, that being said, there's a lot that's still going on with him, but he's on a heparin drip. We haven't seen our nephrologist yet, but I think he's been out of town. But we're on the way. So day 45 was a real kick-ass day. I think we're on day 48 now. Um, but that's my story. And uh I'm I'm mentally exhausted, but I've I'm feeling better about his condition. And yesterday he told me that he finally feels like he could see a way that he could actually get out of the hospital. He feels more positive about it. So, anyway, next week we'll tackle another topic, another storyline together.

Wrap Up And How To Support

I hope you'll 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 OnlyCild Diaries.