Got to the ICU at about 8:15 am, pretty proud of myself for navigating back to the hospital in the morning traffic, and confident that I understood the protocols for parking, going through security, getting a visitor pass, and going into his room, only to arrive to find room 13 holding an empty clean bed and no Roy. After a momentary panic, I found a nurse and she found him in Room 9. You’d think I would notice as I walked by but I don’t really look into the other rooms because those are the containers for somebody else’s story. There’s no particular reason he is in 9 rather than 13 – as far as I can tell the equipment and so forth are the same, but he does have a better view – instead of looking over the roof and a ventilation shaft, he now has a view of a pretty tree and the circular drive of the main entrance.
Roy was not responding to me when I went in and there was a pictogram chart for communication and a wipe board on his tray table which created another moment of panic for me. An occupational therapist came in about that time and tried to engage him. He was not really willing to open his eyes fully or wake up much. His nurse for the next few days, Nancy, also came in and said he was not able to eat or swallow pills and was not answering questions so they’ve changed how they are administering medications. She expected that he would be given a gastro tube, but was waiting for rounds to find out for sure. She offered me the breakfast tray but I had already eaten.
I definitely need to be in the ICU around that time though, because those first few hours were busy. In quick succession, I got to chat with a respiratory therapist, a nephrology resident, the aforementioned occupational therapist, another resident who appears to be assigned to Roy, and the charge nurse before rounds even happened. Roy’s resident came back to ask if I knew about the CT scan showing a nodule in his lung because she planned to discuss it in rounds and did not want me to be surprised. Rounds at about 9 am brought the attending physician and a full cohort of students to the door. Another set of rounds with nephrology later in the day brought a different set of students and a chance to fill in some gaps in their knowledge about Roy’s medical history.
During rounds, the team decided that Roy would have a paracentesis today and to add the air-compression gizmos to his legs. They also intend to find out what is happening with the echocardiogram results, to get him a gastro tube if he is not able to swallow, and to ask infectious disease to consult. The latter came into the mix after they examined his legs – the attending asked the students to come feel the difference between one area of his legs and where he has some discoloration. There was concern it was becoming a skin infection (the specialist later said it is not of concern because his current antibiotic would cover that). It’s definitely a hands-on teaching hospital.
Roy’s portal now says that he is being treated for Acute Hepatic Encephalopathy “and we are also treating” with a list that says Acute Respiratory Failure with Hypoxia (HCC), AKI (Acute Kidney Injury), Cirrhosis of Liver (HCC), Hyponatremia, Pancytopenia (cms-hcc), and a Urinary Tract Infection. So it’s complicated.
Roy did not get a gastro tube today after all; the ENT team wants to do an EGD before doing this because if it goes bad it can go very bad in liver patients if there are varices. I expect he will have the EGD in the morning because he is currently not allowed anything to eat or drink and cannot take any oral medications. Some of his meds are now being given by IV or enema. Other meds cannot be taken without the tube. He also has a very low oxygen dose happening by canula with antibiotics and albumin being given regularly. He’s on a different high dose diuretic, too.
Roy stayed quiet and pretty unresponsive most of the morning, although he did know my name, and would occasionally answer yes/no kinda things, but he perked up a little bit more in the afternoon and was using more vocabulary. He isn’t repeating things as much as before, although there were a few glitches. By about 4 pm, Roy was able to answer questions and had a full interview with the infections specialist; Roy was only a little confused during that – he thought he was in Dallas and that he had his right hip replaced (it was the left). That conversation may have been better because it happened after Roy’s paracentesis.
The paracentesis was similar to those he has had as an outpatient, but this time one of the residents was preparing it, briefing me in advance, and working through the checklist of consent, equipment, PPE, etc. in the process. The attending was there guiding the procedure. In addition to the needed ultrasound machine, they were using an apparatus that they call a spider – and it does look a bit like one, but is a little more cuddly robot in style, almost like Rosie the Robot actually, than arachnid. It is a wheeled rack holding four vessels and a lot of tubing that gets attached to the wall for vacuum suction. Instead of the person doing the paracentesis having to clamp the line and move between containers as they fill, the spider has little floats in the jars that make the fluid move to the next jar once the first one is full. So, in theory, it requires one connection between patient and containers instead of multiple clamping moves. In practice, it is a machine and it was finicky. The paracentesis yielded 2.8 liters this time but by the time it finished Room 9 had an attending, the resident doing the procedure, two medical students who are applying to get spots in the program, Roy’s resident, his nurse, the charge nurse, and a third nurse who seemed to be a utility player, and me. Roy slept through the whole affair.
The medical team here is welcoming; they ask questions and listen to mine. They seem to be trying to take care of me as much as they are taking care of Roy. I am getting a bit more familiar with the facility – I found a waiting room down the hall that had vending machines and what I think is a water/ice dispenser (will have to try it tomorrow to see for sure), I now know where the “better” restroom is, and I am slightly better oriented since I recognized today that the building is arranged in a donut shape around a central atrium. I was too tired yesterday to catch that.
Several folks checked on me and Roy throughout the day by text and email and there were a few phone calls yesterday that helped immensely – all of which are greatly appreciated and help me feel less alone here in this big city. There is a small village of folks taking care of our home and our cats – I am told there was a tutoring session on the use of the Litter Robot, and that Charles, Audrey and Henry are okay though of course they miss us.
My sister Lisa and brother-in-law Derek came in this evening and had a quick visit at the ICU with Roy before taking me to supper. We went to a place called Fred’s which offered some delicious chicken tenders and an enormous menu of burgers, as well as what seemed to me on the menu to be a wide array of specialty whiskeys, tequilas, and beers, and I thought this is a place Don would especially like because of the multiple permutations of bacon in almost every dish – bacon, blackened bacon, bacon bits, spicy bacon, bourbon-glazed bacon, etc. Derek reminded me that we have seen Roy come through a lot of things before. Maybe because Roy is always so complicated, he’s also a bit ornery. Lisa and Derek plan to come by and see Roy again tomorrow before heading home. It was so nice to see them.
I asked Nancy, who has had many patients with liver disease in the ICU, how long patients usually stay. She told me that there’s not a single answer because the cases are so different – some people will be a few days and some will be there for weeks. She said Roy seems to be fighting back and that was encouraging.
Waiting 
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