Sorry, Gentle Reader (although this is not Bridgerton), this entry is a bit long, but it has taken me a bit of time to get past my tiredness and the mentally/emotionally spent point where I can write about this again.
I did not realize until the home health admissions nurse pointed it out last Saturday that the labs done by the rehab showed Roy’s ammonia level at 99 the day before he came home. His ammonia was at 50 when we left the hospital. In some ways, it is a blessing that I did not have that information: knowing that his care slipped so badly in those two days, causing that ammonia level to rise so quickly, makes me very angry. Complaints will be filed once I determine where best to address the issues and marshal my thoughts into a coherent narrative.
The rhythm in our house changed when Roy came home from the rehab. Medications happen on a schedule – three times per day – and the in between times were a mix of domestic chores (albeit at an accelerated pace to accommodate illness – I haven’t done this much laundry, cooking, or dishwasher loading in ages), managing acquisition of prescriptions and supplies, and helping with daily life functions. As his strength has returned this past week, he is getting more of his own snacks out of the fridge and refilling his water bottle himself, and he doesn’t need me to hover quite as much so he travels on his own to the bathroom. He’s still mostly sleeping in the recliner because the catheter makes him nervous, but he has started to sleep a few hours at a time in the bed. The cats are bemused but adjusting.
Monday, Don came over and assembled the new giant red Craftsman toolbox cart – it has been repurposed to be a medications and medical supplies cart. He also kindly opened up a jar of strawberry jam that the factory robot had tightened too much, adjusted the legs on Roy’s walker, and affixed the car inspection sticker to the windshield so the Mazda is legal for the next year. The cart has a nice deep drawer to keep the lactulose bottles. For the first time ever, the drive-thru at the pharmacy instructed me to come inside with a cart – they had a cardboard box of lactulose bottles that could not be transferred through the little bank drawer.
Tuesday we had a video visit with Roy’s oncologist. The immunotherapy, in oncology’s view, was unlikely to cause the hepatic encephalopathy (HE) as immunotherapy generally shows up as inflammation and not as a spike in ammonia. Because their focus is the cancer, they referred Roy back to hepatology for the issues with his liver and the HE. Hepatology cannot see Roy until the third week in July; his hepatologist is out of office due to his own health. Specialists are specialists and in some ways Roy’s health is caught in the in-between.
This situation requires that we weigh what we can control and what we know carefully. We know that the lactulose Roy was taking was at a maintenance dose before the immunotherapy (20 ml/day). His lactulose is now at a much higher dose (45 ml/three times per day) so we agreed with oncology that Roy will resume the immunotherapy on July 16. He will see hepatology the week after; his diuretics are still at a reduced load post-hospital so those will have to stay there until then (and his edema continues but is improving). Essentially, the choices are a) do nothing and let the cancer have its way or b) try the immunotherapy again with the heavier dose of lactulose as a guard against HE. We decided on choice B.
The catheter is still with us. Roy had three visits with urology on Wednesday and Thursday. In the first one, because it was an afternoon timeslot, the PA suggested starting a new medication overnight and then removing the catheter the next morning for the void trial. In the second appointment with the nurse, the catheter was removed to begin the void trial. Somewhat giddy with having the catheter gone, Roy left that office to go to podiatry with strict instructions to drink more than he thought he could drink in order to trigger his bladder to act on its own. (An added plus to the day was seeing Rhoda on our way out of the clinic.) We plied his bladder with two bottles of water, a slush, a frozen coke, and more water, as well as movement, and an internet suggestion of a hand in ice-cold water, but it proved to be, as the urology PA said, a “lazy organ” and did not do its work before the 3 pm deadline. We returned to the clinic and Roy got a new catheter in preparation for the holiday weekend. To give his body, and specifically his bladder, time to recover from the hospital experience, he will keep this catheter for another two weeks before attempting a void trial again. And maybe you know this, but in case you don’t because we did not, cranberry juice helps with kidney stuff but does not help the bladder – the bladder prefers lemon/lime according to the nurse.
In addition to the visit from the home health admissions nurse, Roy has had his weekly nurse check-in in person with phone call follow-ups. He’s slated to have physical therapy twice per week and had his PT evaluation on Friday. He’s practicing standing up, walking a little every few hours, and doing some breathing exercises. The wheelchair has become a hammock for cat snoozes as Roy is relying on the walker for balance at the moment. This week will continue home health visits and include a trip to do labs for hepatology.
We celebrated Independence Day with a visit from Wes to give Roy a haircut and beard trim and a visit from Dan and Leslie who brought a delicious low-salt tostada spread, watermelon, and marion berry pie. During their visit, we watched some soccer and did a bit of puzzle – I have had the same puzzle on the dining room table since January but we made some progress. I am starting an online class on Tuesday called “Power Tools for Caregivers” and picked up Terry Pratchett’s Mort for entertainment. Roy is mostly watching baseball and the World Cup. The past day or so have been nicely quiet and restorative.
Overall, we have underlying trepidation about restarting the immunotherapy but we decided the choice really lay between undoubtedly bad (cancer prevails with no treatment) and something possibly bad but maybe good (maybe a bad reaction again but maybe not and steps forward). The unease will be there no matter what; the HE and hospitalization wreaked havoc on his body and on us, but we feel peace with the decision to proceed with the immunotherapy. Roy is weak but not nearly as weak as someone might expect after HE. Roy would tell you his recovery thus far is down to being from West Texas because the people there just don’t quit. I am more of the strategic mindset – weighing the options and choosing the unknown over the known for the potential gain. Whether the immunotherapy works or not cannot be measured until he’s had at least three doses: one done and two to go. We are choosing perseverance because we are not done yet.
Waiting 
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