We met a lot of people today but I am ending Monday feeling as if we are no closer to knowing where things are going, what the immediate goal is (other than keeping Roy alive), or how long this sojourn will be. I am reserving a room for another week at least while hoping that we know better what’s what, where and when before much longer. It feels like we are perhaps just trying to follow breadcrumbs onto an actual path and may be in danger of Roy becoming something of a hot potato.
The traffic was heavy this morning – our medical student, hospitalist resident, pulmonary PAC, nephrology PA, then a return visit from a pulmonary team of three, a team of two from hepatology, a hepatologist, a dietician, lab technician, and patient transport to take Roy for a CT during which the hospitalist team did a brief chat but not really rounds. This afternoon brought infectious diseases, another lab technician, the actual hepatology duo back for a paracentesis, and another visit from a nephrologist. Slaloming between all of these were his nurse, the charge nurse, the technician, and food service staff. One of the pulmonary folks told me that I was her favorite patient advocate because I was taking notes and could give her information from the notebook about his previous pulmonary encounters.
Some of the specialists here are saying that they just need to get the UTI handled and then he can be transferred (to where is the next question, although I think they believe it would be to Methodist because it has to be a liver transplant center) and the pulmonary team thinks he needs to have some things done outpatient or probably with the team at Methodist depending on what today’s CT scan shows. The hepatologists and nephrologists are all about monitoring his mentation (oral questions and checking for hand flapping) and getting the fluid off his body. And then? It’s not clear from what they are saying. We haven’t yet seen an oncologist, physical therapist, occupational therapist, or dietician for an assessment. Though we did see a dietician briefly who brought me information I asked for in the ICU and she said she would be back tomorrow to do an assessment.
So my expectations of discerning more than breadcrumbs may have been too high. They are all listening to questions, but I think I might not be asking the correct ones, or I may be hoping for more clarity than they can provide right now. They’re all being somewhat guarded in their responses, maybe to keep our expectations in check, maybe because it is just so complicated. I also have a fear that they are going to get the jalopy road-ready only to the point it can get to the next “garage” (and no, I don’t really think of Roy as a jalopy, but he does have a lot of wear and tear on his body at this point). Which makes my brain ask is he becoming a “hot potato” that is going to be passed from hospital to hospital, provider to provider, or get dropped between them?
Roy went on a field trip to have a CT of his upper chest/lungs. It was a bit late in happening and his nurse had to, in her words, harass the CT people to get him taken down. His hospitalist team did say that the HE can be triggered by all kinds of things and that because he has had two episodes already, it is likely to happen again. That worries me. I did ask the Methodist transplant coordinator via my chart if it would help to bring him to one of their hospitals next time he needs an ER, but he wasn’t very encouraging – he said they have difficulty even within their own system getting people into the medical center and have lots of their patients sent out to other places. And we all know that when it’s an emergency you go to the closest one so it was just a random, if I can catch it sooner, and there’s time to drive that far, kinda idea.
After Roy came back from the CT scan, he had his lunch (fruit, whipped potatoes, and vanilla pudding) and the hepatology duo came back and gave him a paracentesis – his second one here. This time the spider had red tubing and there was no audience other than me and his body yielded another 3.75 liters of fluid. He felt so much better afterward and samples went to the lab. The hepatology nurse said that some patients have the paracentesis three times per week; this one has upped his frequency to twice in a week. He is regularly getting albumin and she made sure he had a portion afterward. The edema seems to be better in his legs. His nurse has also taken the needle out of his port to close off an unnecessary route for infection.
Meanwhile, I cancelled several appointments that Roy had scheduled at Methodist this week and fended off a request from Methodist to schedule a few MRI procedures – one for oncology and one for hepatology – It was the first time I have had an AI call Roy’s phone. Because we have no idea when we will be done here, I will follow up with both offices tomorrow as it really depends on how willing they will be to reschedule if I make an appointment.
Roy sent me away around 4 pm so that I could get some supplies and do some laundry. The area is a bit awash in college students and their parents buying goods for their move-in days. It was a little weird to see TCU gear in the store rather than stuff from A&M. I am sad to report that I did not sleep well last night but I am going to try for more sleep tonight.
I’m just not sure exactly who is driving the bus here. I think the hospitalist is but with hepatology and nephrology in the front seat. Pulmonary is right behind them and according to infectious disease, his area is secondary, so he’s definitely further back. I’ve decided to make some very specific questions to ask each area tomorrow so that I can get a better sense of what their plan actually is, if there is one, and if there is not, to get one drafted. I really like birds, but they tend to eat the breadcrumbs, and I want us to have a slightly better path to follow.
Waiting 
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