It was early, around 5 am when surgery came by to talk with Amanda. She was sleepy and didn’t get everything they said, but the resident, Lena, came by later after I was there. All the teams were putting their heads together to figure things out; she explained, squatting down next to Amanda’s bed. I think part of the problem is they are worried that they may need a dialysis catheter and are wondering what to do. Amanda’s kidney numbers were looking better, so they seemed to think the likelihood of her needing dialysis was trending down.
The kidney team didn’t have much to say beyond input on the kidney numbers. They were ok with the catheter coming out. We were just waiting on the parent surgeon to get out of surgery and tell the minions what their plan was. So it was just more waiting to figure things out. They were also going to bring interventional radiology on board. This was an attending-level discussion; the little chicks weren’t going to get any input on this complicated case. We just needed all the attendings out of surgery to get together and brainstorm.
I got a morning nap along with Amanda today. Tank always sleeps through the night, but last night he got me up around 4 to let him out. Well, I thought he needed to go out, but he was just thirsty. I hadn’t heard from Bev yesterday, so I went home to let Tank out and feed him. Turns out Bev came right behind me and fed him, too. Of course he wasn’t about to complain about second dinner! I guess he was just thirsty from eating so much. I needed a nap after not going back to sleep very long before I left for the hospital.
I had a dermatologist appointment scheduled for Monday. They are really hard to come by with Vanderbilt, but I happened to grab a cancellation the week before. I had to cancel that one, but then I rescheduled it when another cancellation on Tuesday morning became available. After we met all the teams and I deemed the coast was clear, I left for my appointment. In April, I had a cyst on my back rupture and become infected. I’d had it along with another one for years and years and had planned to have them both removed, but life got in the way. I went to a stand-alone ER to have it taken care of back in Texas. They lanced it, cleaned it out, gave me antibiotics, and sent me on my way. I had instructions to see a general surgeon to have the sac removed to keep it from recurring. A month later it came back and was infected again. So I really needed to have it seen about, and that’s what I was doing today. The dermatologist wasn’t 100% sure he could get it, so he referred me to plastic surgery to have them both taken care of.
The intake nurse mentioned he lived in our area after seeing our address. He said he liked it and we chatted. I told him why we were here and all we’d been through. He mentioned that to the doctor. So when he came in, he had questions about Amanda and if she’d seen a dermatologist and if we knew how important it was to get regular checks. As I mentioned, Vanderbilt Derm is booked out 6 months in advance. Amanda’s Derm appointment was scheduled over six months ago, and it was tomorrow, so we were going to miss it. Even without that tidbit, the dermatologist was ready to get her on his schedule early. He took down her name and DOB, and said that with that, he could have her squeezed in. Even though the appointment was a bust for me, it provided fruitful for Amanda.
I needed to go home a little early since Tank drank so much water early this morning; I figured he’d be crossing his legs. I waited as long as I could for anyone to come by with a plan, but nothing. So, then I headed home. I knew as soon as I left someone would come by. Barely off the interstate, Amanda called; interventional radiology came by. It was just the fellow without parental supervision, and they had no plan. He had ideas; there was something mentioned about removing the clot, not the catheter. Amanda said she cried at that point! She was confused with some of the timing the fellow laid out, too. They said the vein was too tight, and that removing the catheter without placing a stent might complicate getting a stent in later. He had a broad consent for her to sign for the procedure, which she refused to do since they didn’t even have a plan.
This whole time I’ve been thinking about how the cardiology team denied us peritoneal dialysis. It would have required a port in Amanda’s belly, but they didn’t want to risk an infection. Well, if we’d had that, the dialysis catheter she has now would have been long gone, and it likely wouldn’t have done the damage it has to their SVC. This entire ordeal is frustrating to say the least.
Amanda has been just miserable with how tight her skin is, from her boobs to her face, arms, and hands; she’s just really uncomfortable. She has been peeing a lot more, which is good and bad. Good that her bean is picking back up, but bad that she has to be up and moving. Her only walking is to and from the bathroom right now. She said she feels like she’s going to topple over with all the fluid retention so bad and concentrated up top. I told her with boobs that big and full of fluid, I fall over too!
Lena, the resident, came by to give us an update. She said the IR fellow’s notes were vague, but recapped a little of what Amanda and he talked about. She didn’t take it to mean they planned to remove the clot separately from everything else, which was good because I was ready to dig in on not letting them do two procedures. We were only good with one-and-done scenario. I told her that the fellow had a consent form to sign, and they didn’t even have a plan, and she rolled her eyes. She said this was a complicated case and would require an attending-to-attending call between teams. I told her we really only wanted to speak to the attending from now on, apart from her, of course. Cardiology still had to weigh in and approve a stent, too.
Later on, she swung back by with some more news. The heart team approved the stent plan. So they were going to preemptively hold Amanda’s food after midnight in hopes of a procedure tomorrow. We were still waiting for the attending-to-attending chat with teams, but at least we have a tentative plan now. Lena was leaving to another surgery service tomorrow, so this was the last we’d see her. She mentioned something about a shirt I was wearing during our transplant stay; my po-ta-toes boil em, mash em, stick em in a stew shirt. She asked if we were fans of The Lord of the Rings. Then wanted to know if we wanted to see her Lord of the Rings tattoos! She had J.R.R. Tolkien’s signature/monogram and the tree of life both tattooed on her arm. I guess we were in with her since we got to see those. She’s been great and really doesn’t have to come by and explain things and give us updates, yet she does. I hope she doesn’t lose this attitude when she becomes a surgeon.
Leave a Reply