September 17th was also Ben's birthday and we were hoping to take him out for Chinese food with Uncle Scott and maybe Jessica's family. However, the day before Ben called to say that they were on Covid quarantine again due to two cases on their unit so all outside visits were cancelled. That is not a fun thing to have happen on your birthday. Ben was a good sport about it all. I was able to see him a few days after his birthday as he had a fibroscan of his liver scheduled. That allowed us to do some birthday shopping and pick up donuts for the whole unit to celebrate Ben's birthday a few days late. We didn't take him for Chinese food until last Tuesday (October 25) because life has been a bit crazy. It still tasted good over a month past his birthday, but not as good as the Chinese restaurants in Davis County.
In fact, Ben had two different outside appointments during their Covid quarantine so I got to see him a couple of times plus we did a google meet as well. Fortunately, Covid was quickly controlled and no one else got it this time.
The results of his fibroscan only showed some minimal scarring of his liver--not enough to cause the problems in his liver blood tests including his high ammonia levels. They continue to try to balance his bowels to walk the balance between diarrhea and constipation. It appears that the problems are being caused by medications but those medications are needed to manage his mental health so they need to try to treat the liver issues in other ways. He had two amazing weeks at the beginning of October when his ammonia levels dropped to almost within normal limits and his overall mood and energy levels popped right up to more normal. For the first time in a few years, he was laughing and smiling and making funny comments. To see his natural smile return was such a blessing to me. However, the ammonia levels went back up again and he lost those improvements. It proved the impact of the ammonia but it also means that the things they were trying weren't enough to stabilize the problems in the liver. They continue to tweak the medication, but they are also sending him to a liver specialist (who we hope to see tomorrow afternoon if the state hospital medical team approves it. We got a cancellation appointment instead of having to wait 2 or more months to get in, but it puts USH in a bind getting the paperwork approved. Hopefully, it works out tomorrow morning -October 31- so we can make that appointment.)
Ben feels very discouraged because he can't do anything about the medical issues surrounding the liver but he would like to be discharged. However, they can't discharge him until they know that they have the liver stuff under control, because if they can't stabilize him--then they will have to consider making major medication changes which can only be done for him at the state hospital. He is between "a rock and a hard spot" and he can't do anything about it! Poor guy!
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