Sleepy Time

Wednesday night, I headed home later than I wanted but at a reasonable hour. Early enough to grab some dinner, I went with Indian, not Amadna’s favorite, so I took advantage of eating alone to have what I like. I was even able to watch a show while eating and got to bed before eleven. Amanda has her phone, but mostly just to reach me, so I text her. I wasn’t sure if she’d have it on or not, but she texted me back. It was a good feeling, a little more normalcy. I know what some of you are thinking, so let me nip that in the bud; No, do not text her! She is nowhere near ready to be talking to people. I don’t want her to feel obligated to talk to or respond to anyone, especially no social media. With the ICU delirium, even though in the past, we are still dealing with the fallout from it.

Thursday, when Dr McChick came in, he had a joke from his 8-year-old for Amanda. While he was gowning up at the door, he asked what type of cheese was the kind that didn’t belong to you. Amanda said she didn’t know, but I knew right where he was going. As he came in, he said, “Nacho cheese!” Amanda laughed, then gave a huh, funny. He was happy and said his son would love that she laughed at his joke. 

The general consensus is that we were waiting for the blood cultures to come back. The cultures taken from the knee during the procedure showed to be growing the same as the blood, pseudomonas. How badly the knee is infected is not for sure. Also, how it got into the bloodstream is a mystery. She has multiple wounds; the new tunneled catheter is a likely candidate. At the end of the day, it’s the best guess. The cultures taken from various locations via regular blood draw and draws from the dialysis catheter will give us a good idea of where we are going from here. So, holding pattern for blood cultures it is.

Nephrology was happy with the dialysis session on Wednesday. It turned out to be the best yet, 2.9 liters. They gave her albumin to help, and it seemed to do the trick. They talked about adding a session over the weekend if needed. ID was echoing everyone else, see what the cultures grow. The fate of the rest of the knee hardware and the dialysis catheter lay in the cultures. The problem is that the pseudomonas is sticky, and it can easily latch onto anything foreign. Big prayers it wasn’t or isn’t now attached to anything left in the knee.

We had a visitor, Beverly, stopped by for a while to see us. It had been a minute since we’d seen her, since her girls started back to school, and she had a big birthday party for the youngest. It was good to see her. While she was there, the sweet housekeeper, Kesha, stopped by to clean. She said Ms Simmons is always the same: happy and nice every day, no matter how she feels. Bev and I are too much alike, so she chimed in and said, “Well, Barkley, not so much!” Kesha said Well, he’s the caretaker, sometimes he needs to take care of things. She had been in the room a time or two when I was lambasting a nurse or doctor with questions; she knew how it went!

This morning, Amanda was sleepy when I got there. I mean, out of it, sleepy. It was the pain meds, and it didn’t take me too long to figure it out. She needed some more when I got there, so a new IV dose didn’t help things. She says the pain isn’t that much better, but she’s not a good gauge right now. I can tell she feels much better. I was going to give it a bit, but I figured if her alertness didn’t improve much, I’d be talking to the pain team about bringing things down a bit. 

Doc McChick had a joke from his son to tell Amanda, but he forgot it and was mad, saying it would bug him all day! Not much was new from them, heart and transplant-wise, Amanda is ready to be discharged. If not for the infection, we would have been at the inpatient rehab facility. A nurse, the other day, called it the nursing home. We are not calling it that! The doc was asking about PT, and I voiced my disdain for it on this floor. I told him at best twice a week here in the step-down. I was preaching to the choir; he was just as angry. It comes down to staffing; they just don’t have the PTs to cover all the cardiovascular surgeries they have. Growing pains are likely why many go to a rehab facility. As the team left, I told them Don’t worry, I’ll have her up today. 

Amanda was so sleepy throughout the day, I knew we were going to need to cut the IV dose in half at least. I had to stay after her constantly to get her to take her meds. It was so frustrating, she’d mill around the pill, come then fall asleep. Then, she would fart around again, trying to pick out what pill she wanted, then fall asleep again. I had to stay after her constantly; she would get mad thinking it was a few seconds after I’d said something, but she had been asleep for a while. It was frustrating for both of us. I probably had to wake her 20 times before she finished her pills. 

We had a visitor in the late morning, Susie, who is a friend of a friend and used to go to church with some of our friends from church. The mutual couple has since moved to Colorado; we caught up with them a few Pagosa Springs trips ago. Susie was a supervisor or head of the PT department and the PTs and OTs we’ve been working with. One OT we liked in the CVICU had mentioned she’d been asking them and checking in on Amanda’s progress. She had been off in July on vacation a bit, and with Amanda having such a rough go of it, she didn’t come by early on. It was good to meet and talk with her a bit. Amanda was still in and out of it. 

Before Susie left, she asked about our Happy Light. I spoke of the ICU issues and delirium and how we’re still battling the fallout of it. She asked if I knew of Post-ICU Syndrome (PICUS). I had not heard of it, but what we are battling now is just that, once I looked it up. There is also PICUS-F, a family component of the syndrome. After I researched it, I found that Amanda is dealing with many of the issues.  

Susie mentioned that what helped some patients was reading their family members’ journals of what happened. Well, Amanda is covered in that department with these journal entries. It will help because she has been so confused about the order of how things happened since she was so in and out of it. It’s gotten worse since the knee surgery. She just isn’t herself cognitively either. It is hard because she’ll be worried about the dumbest things. Telling the doctors and nurses about random things or completely confusing doctors. She was terrible about telling the wrong doctor things they don’t deal with, and still does that. The meds don’t help either. I’m a little abrasive, and I know that, so that doesn’t help much either. 

I got Amanda up with the help of a couple of others and got her to walk a bit and then get in the chair mid-morning. PT knew they’d have to come by before noon because that was when Amanda was headed to dialysis. I knew they wouldn’t get to her afterwards, too. They came by while a surgeon was checking the groin wound and redressing the wound vac. They left the minute he threw the curtain back. I ran out to tell them to come back in a bit because he wouldn’t be there that long, but they didn’t hear me. The nurse said he’d let them know when the surgeon left. When PT finally came back, it was a good bit after 11, then the nurse ran them off because they needed labs. I pretty much threw a fit then. They plead their case for the Stat CBC labs, a standard panel they’d missed this morning, nothing that important. I just wasn’t having it. I told them, “The dialysis nurse can get the damn labs; she needs, PT!” I also mentioned she would miss PT for sure if they push it off again, and it wasn’t like PT was going to work with her that long. It wasn’t too long before they got PT and abandoned the labs! PT and OT came in praising and saying that never happens and that they never trump the nurse. I told them I had to raise all kinds of hell, but made it happen. After being here and riding this rollercoaster of a recovery for a month and a half, I’m not one to mess with right now. I’m a little on edge and just not having it right now! 

ID came by, and before he got in the door, I was asking about blood cultures. Nothing has grown yet! That was the news we wanted to hear. Everything gets to stay in for now. Amanda was still out of it and just couldn’t stay awake, so the ID doc and I did all the talking. I asked about the catheter and the knee hardware. He was optimistic about the dialysis catheter but not so much about the knee hardware just yet. The hardware will tell us in a couple of weeks with how it feels, which is what they go on. I’m praying so hard that it doesn’t have to come out. Just like Britt said, we prayed the trach down so we can do the same with the need to pull the hardware.

The rep from the Vanderbilt rehab facility came by; there was no need to talk us up, I’d already specified what they requested. I had a stack of questions for her. The order is for 15 hours of PT a week. Plus, she’ll have dialysis for 3 days a week, those are becoming about 5 hours a time lately, with the transport there and back. So, that’s 15 hours too; she’ll be way busier when we get out of here. That also made me think of how busy we’ll be when we get out. PT plus dialysis, and we’ll be transporting ourselves. I’m really going to be worn out then! 

I went home while Amanda was in dialysis. I needed to meet an AT&T rep to set up fiber. He’d stopped by peddling the service last week, which I first turned down. However, the “free” Xfinity mobile line I had with their interest service in Houston and again here in Nashville cost me, so I was retaliating and just canceling everything with them! The AT&T deal came with no contract, a cheaper price, better speed, a trial period, and a special promo for our zip code of $500 in gift cards. So, it was worth the spiteful move. I got a few things done around the apartment, but after eating Indian leftovers, I didn’t feel like doing anything and just watched a show. 

I picked up some Chick-fil-A for Amanda on the way in, but it was the wrong timing, close to 5, and everyone else was doing the same. It took longer in the drive-through than the drive-in did. I was there before Amanda. Dialysis didn’t go too well; they only pulled a liter off out of a 2-3 liter goal, her BP was too low. She was in pain, too, I could tell. We have a nurse in training today, and his trainer wasn’t there when he came in. I told him Amanda would need some IV pain meds. He wanted to come in and see what she had available. I quickly rattled off the time and what she had in dialysis, and that she hadn’t had any IV since before she started dialysis. So, the only thing left was IV. He wanted to argue about giving her any pain meds, and they needed to come up with a plan. I told him we’d talk with the pain team, but she needed something now. He wanted to argue, remember how I said I wasn’t having it—bad timing for the trainee to have a pissing match with me. I laid into him pretty good, telling him I wasn’t going to figure anything out with him and to go get the IV meds. I think I even pointed to the door for him to know how to leave to go get it! I wasn’t about to wait to devise a plan and call an NP, and then Amanda get meds two hours later. She could just be sleepy and zonked; that’s better than being in pain till we can figure it out.