An early start, as has become the norm, brought me to Roy’s room by a little after 8 am. His nurse today was busily handling medications and such and overheard me telling Roy that my laundry had been hanging all over the hotel room because the dryer cycle ($2 per cycle) was short and I had no more quarters. Before I could turn around, he had come back into the room with a zip bag of change and fished out at least another laundry load’s worth of quarters to give to me – and would not take cash in exchange. He usually saves them up to play pool but said he wasn’t going to be able to play for a while and he wanted me to have them. So I am now prepared for another wash day.
The morning brought the normal heavy traffic through Roy’s room. First, the hospitalist resident did a pre-rounds check. We had a visit from a nephrology PA and then the normal rounds from the hospitalist and his crew. The dietician came back to check settings on his medications and feeding while Roy was eating his fruit with greek yogurt and honey. The actual food is on top of the “food” in the tube. We then saw the pulmonary PA, with a follow-up from a pulmonary doctor, before a visit from a therapy duo – occupational and physical together.
His kidneys are holding steady and improving so they do not intend to change anything related to that. The liver remains irritated as evidenced by the fluid building back up in his abdomen, but the edema is coming off of his legs. Hepatology and Nephrology really want to get fluid off of his body. The UTI is being handled and seems to be going away. They adjusted the lactulose to be oral only. He still has the feeding tube and oxygen as well as a couple of IVs.
During rounds, the hospitalist team suggested that Roy could shortly be transferred out back to College Station because what he needs now can be done by any hospital. Roy’s liver function remains the priority with a goal of getting to transplant, but at his original center at Methodist not here. When he is able to go, they will send him by ambulance because he still needs hospital care. After they left, Roy asked me to request that they send him to the Houston Methodist system instead. I’m not sure it will happen, but that request was relayed and we have to try – it is important that Roy feel confident in the level of care he is receiving. I let them know that Cypress or Woodlands would be closest if the medical center is not an option. I explained that I did not want him to become a hot potato going from place to place. I don’t know if it will help for him to be in the Methodist system or not, but that’s where he wants to be if he can be.
The other thing that the hospitalists discussed with us is that the primary goal at the moment is to keep Roy compensated – so functioning with diuretics, albumin, paracentesis, and so forth to keep the encephalopathy at bay and be able to move towards transplant. However, because he has had the encephalopathy, it is likely to happen again. They have a number of patients here who come in about every six weeks because the slightest infection or change in electrolytes can set it off. So yes, we are likely going to experience this again. We let them know that we want to be told what is happening so we can deal with it.
The pulmonary PA came to show us that there is definitely a blob on his CT scan in his lung, but she dug backwards into his records and said it is also there on his PET scan from June so maybe oncology wasn’t concerned with it, it could be scar tissue or something else that they’ve ruled out. She said she did not want to do a biopsy until they’ve consulted with oncology in Houston. We know we don’t want to put any extra holes into Roy if we can avoid it (every one is a potential site for infection). She told me I needed to ask hepatology and pulmonology if they were aware and if it concerned them in relation to his possible transplant and we should take copies of the imaging to them. So I got to go on a hunt for the Medical Records office to do paperwork and then challenged my laptop to download all of it because whatever machine makes discs isn’t operational at the moment. I’ve downloaded; how I get this from me to Methodist people is a problem for another day.
We are aware that if this is another bit of cancer that it may throw Roy off of the transplant track. Usually they will not transplant if someone has cancer outside of the liver. However it doesn’t do us any good to hide – if there’s a monster there, we need to know and we need to deal with it. There’s a 1.1-1.7 cm blob we will now keep our eyes on all the while hoping it is just scar tissue or something else benign.
The other pulmonary doctor came by to just make sure we had been told about the CT results. He is an alpha-1 researcher and we have discovered in talking to him that Roy’s condition is not the most common type of alpha-1. We know his condition as “alpha-1 chymotrypsin-deficient cirrhosis” but whatever it is, it is outside the norm because Roy is usually outside the norm. Because we do not have children, it really doesn’t matter at this point, but if he decides he wants a definitive answer, Roy can have a genetic test done. He’s currently not interested. The origin of his condition is less important than simply dealing with the results of the disease no matter what name it wants to go by now.
The Occupational Therapist and Physical Therapist got Roy to sit up on the side of the bed, do some foot flexes and do 10 little kicks. That was enough for him. He was wiped out. They will be back tomorrow and might try to get him to stand up. So he still isn’t up out of bed or walking even with a walker. He now has some stylish dark grey hospital socks to add to his collection. He’s scheduled for a swallowing test very early tomorrow morning; my guess is to be sure he can have the feeding tube removed.
Any transfer is likely to be a few days out. There is no clear timeline on that, but we now know that we are not here for the long haul and, if he continues to improve and be compensated, he will get to go south to be closer to home. When that happens, he is likely to go by ambulance (not whirlybird) because he will still need to be cared for at the hospital level.
It seems like it has been a week already but it is only Tuesday. I have to remind myself that it is Tuesday – all normal patterns are gone. I did get some sleep last night – possibly because I simply had to – and I hope to repeat that tonight. Roy has gotten his glasses on again and watched some news while he ate his watermelon chunks. He’s trying an enchilada tonight as his entree. He enjoyed the lentil soup he had at lunch; he is still not eating a lot, but he has started eating. He was happy to hear from Esther that the Orioles are doing well and is currently watching some college baseball on the TV.
Waiting 
Leave a comment