Friday’s trip to the Emergency Department lasted until about 8 pm at which point Roy had the choice to be admitted or to go home. He selected home. His labs came back with his sodium back to 130, not great, but not life-threatening, and with notable dings of abnormality on his LFTs and on kidney function. However, the best an admission would offer was monitoring. The ED doctor suggested that Roy get more labs this week to check things and to return if things got worse.
This time around, Roy had room 32 which sits at a cross-roads in the ED. A lot of traffic goes swirling by as people go to get scans and get brought back to their allotted spaces – in the hallways or in rooms. Roy lucked into a room instead of a hallway number only because the original nurse thought he was likely to be admitted and getting a real hospital bed upstairs would likely take 24 hours or more. He went on a brief excursion for CT scans, without contrast on our insistence, but otherwise hunkered down under 3 blankets on his left side for most of his stay in 32. We got a brief visit from my sister Lisa who happened to be in town doing work for the sorority chapter. In the end, his labs were not as scary on Friday as those taken on Wednesday but he needs to have things checked again.
Getting the labs repeated would have been relatively easy a month ago, but our PCP retired and modern communication systems being what they are, getting in contact with and actually seeing a new PCP is challenging. The apps and computers and customer service people on the other side have no sense of when someone is in the middle of a serious medical situation and you simply cannot message a doctor that you have not yet seen in the flesh. A patient does not really exist for the doctor on the other side of the calendar or the message until there’s an office visit. And, for whatever reason, office visits are only available months in the future.
Since Friday, we’ve left a MyChart message with the old PCP’s office asking if they can intervene, I’ve put Roy’s previously scheduled new PCP medicare follow-up (November) on “add to waitlist” for an earlier appointment, and I’ve scheduled a “new patient” appointment with the new PCP at the earliest date (September) and marked that as “add to waitlist,” too. Roy’s talked to the centralized scheduling office by phone and asked that the message to that specific PCP’s office be marked urgent explaining why. We alerted both oncology and hepatology to his ED lab results, too.
As of last Wednesday, Roy’s about 20 pounds heavier than he was before he had the infusion – the weight is all in his abdomen as ascites. He’s understandably quite miserable. Home health PT came today and showed him a new way to lay down to try to feel a bit better. More importantly in the short-term, the therapist used their status as a medical professional to get through to an actual person at the PCP’s office and bring Roy into that conversation. We await a call back tomorrow; the PCP was out today.
Oncology believes that Roy needs to have a paracentesis (and I’m of the same non-medically-trained opinion and kinda thought it might come up at the ED). Oncology asked today that we have a doctor here order one, but if we cannot get that order because we cannot get to the PCP, they will order one for him at Methodist. Now we wait to see if Roy can see the new PCP and get this ordered here or if we will be taking an unscheduled trip to Houston for this procedure.
Roy last had paracentesis, which is the draining of the fluid that’s pressing on everything in his abdomen, when he was hospitalized at Methodist in 2023 for his last liver biopsy. Having a paracentesis would take some pressure off his internal organs and make him more comfortable, at least temporarily. The downside is that at this stage, the fluid will likely build up again and this procedure could become a regular part of his routine as his liver deteriorates (this repetition often happens in end-stage liver disease). We might get lucky – maybe Roy will be weird in a different way and just need a paracentesis every few years (it could happen).
In other news, we have a bumper crop of cardinals in the yard – if I put a sprinkler on during a heat advisory, the whole cardinal clan of adults and young fledgelings will show up to cool off by splashing in the water. There were at least six young ones. We now know of a new-to-us Mexican food place in town because Cathy and Kathy brought us some delicious comfort food on Saturday, and we had a brief visit from Russ who kindly augmented Roy’s Gatorade supply. We are expecting a delivery of a few chairs this week – if people are going to be visiting, I have to make sure there are seats in the den for guests – not everybody likes to stand with me in the kitchen peering over at Roy in his recliner. I still need to think about some appropriate glassware for offering drinks (my hostessing skills are quite rusty). Every time I am just about convinced that we are on our own, somebody pops up in a text, phone call or email and reminds me that we are not and I am thankful for each one.
Living in this In-between is difficult, and I am still learning how to “people” in my stumbling awkward way but I thank you for giving me grace as I learn – to ask, to accept help, and to let people see less than perfect. Oh, and I have an armadillo in the back yard – I’ve seen it once and heard it once when Audrey was being naughty and not coming in at night. It’s grey, too, but not at all the same shape, although it ignored me as thoroughly as she does while it rooted around in the leaves in the flower bed and under the deck.
Waiting 
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