It’s been a couple months since my last post. For the most part, that’s good news. Things have been fairly stable and have been going pretty well. For the most part.
For those that didn’t know, Becky had been dealing with a lot of shoulder pain last year. She saw a couple different orthopedic doctors, and the diagnosis was that she had significant arthritis in her shoulder, almost complete loss of cartilage in her joint, and a few bone spurs. The only long-term solution was to have a shoulder replacement - especially since most pain medications would be off limits for a liver transplant recipient.
Well, that wasn’t on the radar. In hindsight, even though it may not have changed her mind about having the surgery, we feel we were not well informed about the post-surgery pain, physical therapy, and recovery time. Shoulder replacement is much more painful and involved than knee or hip replacement. One of the unfortunate side-trips for Becky turned out to be the result of taking some of her medications too close together resulting in her getting over-sedated. This caused her to aspirate some of her medication, which led to pneumonia and other complications. After a couple days in the hospital, she came back home but the transplant team restricted her to only Tylenol for pain. That made the next week or two even more challenging in terms of pain management, but she made it through it and is regaining strength and range of motion in her shoulder.
After that process started to level out a little, Becky felt like she was getting a UTI. Tests confirmed that and she started an antibiotic. The symptoms seemed to subside and all seemed well…for a few days. Not long after finishing the antibiotics, the symptoms started to return. More tests. This time, the tests indicated an infection that was not likely to respond oral antibiotics, so the UTSW transplant team and infectious disease doctor recommended a seven-day course of IV antibiotics.
Normally, this would be fairly simple, although it would require a trip to Dallas to have PICC line placed so the IV medication could be administered at home. We didn’t even know that was possible, but apparently, it is. Who knew? However, since it was flu season, all beds at UTSW were occupied and there was no clear timetable for her to be admitted. The team wanted to get the medication started so they coordinated a plan to have Becky start at the local hospital ER, and then she would get admitted to the local hospital for treatment. This seemed like a good plan, but there were a couple speed bumps.
First, it’s flu season here too, so hospital beds are hard to get. She spent the first night and most of the next day in an ER room. At least she wasn’t one of the many patients that were in beds or even chairs in the ER hallways. But for somebody on immunosuppressant medication this was not the ideal place to be. She did get into a room a little less than 24 hours after getting to the ER.
Second, coordination of treatment was not quite as smooth as we hoped. Although there was good communication with the ER doctor on duty to get things started, information was not clearly flowed to the hospital doctor on call. That lack of communication and the weekend kept Becky in the hospital for another four days before the PICC line was placed. It took almost another day to coordinate home health care to remove the lines once the medication was finished.
I’ll end this update on a good note. For various reasons, the hospital case manager could not find a home health care service to provide the needed services. Insurance and staffing were the main obstacles. However, it turned out that the nurse that came to train us on how to administer the IV antibiotic at home lives in our neighborhood and recognized us, well, our story, from my posts in the neighborhood Facebook group. When he found out that we were having problems finding a home health care service, he volunteered to take out the PICC line himself on his own time at the end of Becky’s treatment. There are still good people around!
Things seem to have improved. Becky's feeling better. I'm sure there are more tests and more bloodwork in Becky's future to confirm all is well. We're still learning how to navigate all the twists and turns.
In the meantime, we're going to start planning a Disney vacation!