I was locked and loaded to plead our case to keep the dialysis catheter out and not put it back in when the team came by. Amanda had strict instructions from me to hit them hard with why we don’t want it back in, in case they were there before me. I told her to use waterworks if needed to get her point across; crying for something like that as a man doesn’t come across the same way! So, I have sternness and logic to push my agenda as a man. Or Amanda would say meanness over sternness; she often tells me, don’t be a jerk when a doctor she likes is about to come in, and we have a rebuttal!
So in pre-rounds, aka no parental guidance rounds, I laid our case out. I said this has been a long road for us, and this is the last hump. We really didn’t want another procedure after all this. I was ready to lay out how long she’d had some type of line in her, nearly a year for that dialysis catheter, and all in all, either that line, a central neck line, a midline, or a PICC line since December 2024. I was ready to persuade them with a ‘Wouldn’t you want to be able to take a real shower after a year and a half?’ I had my logic all ready, and if that didn’t work, then I’d pull out the sternness. I wasn’t told to not be a jerk on this one, so I felt I had a little leeway if needed; leash off and ready to attack!
I only needed part one of the plan. I had no pushback, no resistance; they caved quickly. I was a little disappointed; I was prepared for a fight! They all agreed the fellow, resident, and PA were perfectly fine with the catheter not being put back in and said that wasn’t even the plan. We made sure they knew they needed to convey that to the IR team. I said that because when we talked to the IR attending, he said it was going back in. They perk up when you use the, ‘Well, I talked to the attending.’ The pee-ons never take to the other teams attending. Attending only talk to each other, and there is a lot they miss when a case like this is at an attending level only, and the children don’t hear when the parents are talking adult stuff! So, I wanted to make sure they knew to get the word to the attending that the no caterer was approved.
Same story with the nephrology team. They were completely fine with no catheter going back in. We told them to make sure IR knew as well. Yet, when surgery came back with parental guidance, mama surgeon had a different opinion. She said the catheter needed to go back in. Reinitiate phase one; I wanted to jump straight to the jerk plan and almost said, “Well, that’s not what your children said!” As I laid out the case I had already presented, all the children standing behind her were looking at the ceiling, not wanting to make eye contact since they had already heard our plea and approved the catheter not being put back in. I initiated phase 2 by explaining we knew the risk and there might be a need for dialysis, and that the contrast could hurt the kidney and we may have a setback.
I made it known that we were willing to take the risk. I used a little sternness, since she had the typical arrogance of a surgeon to her, but didn’t need to go to jerk level. She approved as long as we were aware of the risk. Later, she came back to say that she spoke with the IR attending and the nephrology team, and we were a go for no catheter. When she left, Amanda said that it hurt her to come back in here and say that. Being rebutted and having other teams side with us was rough for her! Her coming back was like she was admitting defeat. I don’t think surgeons are used to patients arguing a case and advocating on their own behalf. We’re no doctors, but we have enough experience to know what is best for us. I think there should be options for some patients, and we should weigh in on the risks and rewards. It is our own lives, and at the end of the day we go home with the consequences of the bad decisions, not the doctors.
After that, it was just a matter of waiting for them to get her for the procedure. The OR time was 2 pm, and we seemed to be the only ones that knew that, perk of us saying we were only talking to the attendings yesterday. All other teams and our nurse said they didn’t know when we’d go back; we had to inform them of the time frame. Amanda and I were talking a lot. I mentioned how I see Nashville as having a broader purpose than just the new heart and kidney. We’ve made a lot of connections here, a lot of new friends, and our horizons have been broadened. I just know there is more to Tennessee than Vanderbilt for us. It may be years before we see it, but something else is emerging from our time here. I joked that I had a hard time seeing the overarching God purpose in this last hump here in the hospital while we’re so close to home, though. I said this one is still a bit of a kick in the gut; it feels!
They got Amanda for her procedure a little after noon. It was farmers market day, so I followed her out and headed to get lunch. It has been hot, Tennessee hot, not Texas hot, so the normal vendor crowd was light. It’s just humid, not hot. Though for Tennessee it is an extreme heat advisory. I couldn’t help but laugh. The heat index during the advisory was only in the mid-90s, and everyone is acting like they are melting. In the shade, it feels like a fall day back home! I grabbed tacos and found an empty bench to sit on and eat. I had plenty of options; the usual full outside seating was desolate in the busy lunch hour. I sent a selfie out to friends, joking about how weak Tennesseans are when it comes to heat!
I skipped the waiting room and stayed in our room to wait for Amanda. Since covid, doctors don’t come out to see you anymore, in my experience, anyway. While I waited, I made Amanda’s bed with fresh linens. I laid it flat and raised it to do so. Something happened because I couldn’t get it to go back down; nobody could. Something I’d done a bunch before it the hospital yet this time I broke the bed! They ended up having to get a new bed brought in.
I was getting antsy, and so were some of my prayer team. After a while, I had a few people ask how long the procedures would take, and others ask for an update. Four hours after they got her was my limit. For an update, I skipped the nurse altogether and went straight to the surgery PA. She had just gotten an update that Amanda was out and doing well. I could see her mind searching for another word besides patent, as she mentioned the stents were open and flowing well. I almost wanted to tell her it was ok to use the medical term!
I got a call from a ROCU (radiology observation care unit) nurse. He said Amanda was out, and I could come down. ROCU was a new designation I hadn’t heard of before and didn’t know where it was. I knew where radiology was, so I had a general idea of where to go. When I got there, I was surprised when I saw Amanda. I expected her to be in bad shape, and figured I needed to tell them what pain medicine to give her. She was calmly sleeping, lying completely flat, with the bed at hardly any incline. Usually, anything under general is pretty bad for her when she wakes up. So, I was surprised by how calm and pain-free she was.
When she woke, I explained that everything looked good and the stents were wide open. In a very quiet and squeaky, childish voice, she happily said, “I saw pictures!” I was confused because it is typical for her to see the image screens the doctors use in the cath lab under mid sedation. But she was under general anesthesia and completely asleep. Later I found out the IR attending had shown her pictures on his iPad.
They did their procedure only through the venous system; no arteries were punctured. So, her bed rest was only two hours versus four. We stayed in the ROCU until the bed rest was up. The nurse there was great; I already liked him after our phone call. When I got there, he stood and shook my hand before taking me bedside. He’d called for transport once she was off bed rest. When they didn’t show up quickly, he just wheeled Amanda up himself.
Amanda was ready to get up and go to the bathroom once she was back to the room. Apparently, judged by her output, the contrast didn’t hurt the kidney that bad! Later blood work would confirm the kidney was working great. Surprisingly, she was hungry and wanted her go-to Vandy meal, broccoli cheddar soup from the Panera Bread in the lobby. She ate more than usual, so I took that as a good sign. I had already planned my dinner, thinking Amanda wasn’t going to eat, and grabbed some empanadas from the farmers market to have ready for dinner.
Since she was doing good, I didn’t stay the night. I did stay pretty late before I left for the apartment, compared to when I usually go home. Amanda did start to have some chest pain about the time I called to tell her I was going to sleep. That wasn’t surprising since she is usually sensitive to anything they do around the heart. Turns out not long after I talked to her, they called the rapid response team because of her chest pain. Being on the general transplant floor, they are a little trigger-happy with the chest pain and the rapid response team. On the heart floor, they would have been a little more conservative. Amanda never called, nor did the nurse, but the way she described things, coupled with my doctorate in “Amanda medicine,” meant I wouldn’t have been worried anyway. The NP on the rapid response team said it was likely inflammation from the stent placement.
I was up early to get ready to come in so I wouldn’t miss rounds. I didn’t want to miss the IR doctor if he came by. I walked in the room StarBs in hand, a refresher for Amanda and a stout cortado to wake me up. The surgical team gave congratulations on the stent when they walked in. They said we usually wouldn’t congratulate you on a stent, but we saw the images and how much the veins had opened compared to before.
Nephrology was doing rounds in the hall for a while. Amanda and I were joking about one of the fellows on that service. He was rounding as a resident in the CVICU last year. He wasn’t very good with his communication skills and was trying to get Amanda to sign consent for something like CRRT, the continuous dialysis. Amanda was pretty much unconscious, in and out at best. He laid the consent form on her lap to sign. No pen or anything. I jumped to the last phase I have with hospital staff, bypassing all other stages, even the stern stage; I was a jerk with him!
He caught me in a bad place; the CVICU was horrible, and I was pretty irritable- either tired, strung out on caffeine, hangry, stressed, or just plain drained. I grabbed the consent, yanked a pen from his hand, and said, “How do you think she can sign anything in this state!” He was butthurt about that for a while. It didn’t help that any chance I had to make him feel dumb, I took. He made it easy most of the time, if you know what I mean! I began to tolerate him a little, and he did get better after a while. He is still very quiet and won’t say much when the attending is around now. Amanda mentioned how it took him a week to even make eye contact with us, and we finally got a smile out of him yesterday. He may have had a little PTSD from our encounters, too!
I had to run to the apartment mid-morning to meet someone from the dialysis center. They were coming to pick up the home dialysis machine. His job was easy since I had already unhooked it. We still had the centrifuge, a machine that spins blood to separate it. I had it out for him to take too. He said they couldn’t take it after it’s been used and just to throw it out, “or sell it; those things are expensive,” he said! So, if anyone needs a centrifuge, hit me up! I ran by Whataburger to grab breakfast on the way back to the hospital.
The plan was to get Amanda off the heparin drip, then transfer to an oral blood thinner. They wanted the drip to run for 24 hours, then transition afterward. We were told she’d need clotting labs and all that, so we were hoping for a Sunday discharge at best. Though on the way back in, Amanda called and said that when the surgery team rounded with the attending, they seemed to think she could go home today. The surgeon said there wasn’t a reason to keep her other than labs, so he didn’t see a need to keep us since we live so close by. Other teams needed to approve, but that was the tentative plan. By the time I’d gotten there, that was the plan: to discharge late tonight. I still made sure to bother the nephrologist and confirm she was on board with discharge, too. It still seems like a go; the nurse said after 6 pm, which really meant around 8 since shift change is at 7! But will take it either way.
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