There weren't many scheduled doctor's appointments this week, which was a nice change. This was also Rory's "Week Off" from chemo, although we've learned that often doesn't mean a reduction in symptoms for her.
Tuesday we got a little bit of a "date night" and used some Red Robin coupons. Rory was actually pretty hungry, and it was good for her to eat an entire meal. Afterwards we attended the musical BRIGHT STAR at Hale Theater. I watched and enjoyed the show, and I think Rory enjoyed the parts for which she was awake. If nothing else, it was great to have her out of the house for awhile, even if she insists she would have been home in bed if we didn't have the play on our plans.
Wednesday she still wasn't feeling much better, but we met with her primary care doctor late in the afternoon. She is really good to listen to Rory and offer input and suggestions where she can, even though most of her actual treatments are beyond her expertise.
For those keeping score, Thursday of this past week was my father's Angiogram. Fortunately there was nothing "exciting" going on at home, so the timing worked out well.
Friday afternoon I got a text message from Rory saying that she was having full-body shakes, severe enough that she dropped a jar of jam in the kitchen. She asked me if it was something worth going to the hospital for. I joked that of course we should go, because when we go it's always on a Friday!. OK, so maybe that joke was in poor taste at the time. Later that evening I got a call from home saying that Rory was having another seizure, similar to the ones from last October. And, similar to last October she seemed mostly OK after the episode passed. Kaeli and Caiden were there, and Kaeli helped put Rory to bed for the evening. We did get a callback from the on-call doctor saying that if Rory had been experiencing seizures all day, that she needed to go to the ER. We decided to wait to see how the next day went.
Saturday I woke Rory up to help with her morning medications, and to make sure she had some breakfast. She was still shaking badly, in large motions compared to her typical seizure twitching. Plus, she was awake enough to talk a little bit, although her speech was very slurred and difficult to understand. I ended up having to feed her toast to her, as she couldn't hold onto it and wouldn't have been able to get the food into her mouth by herself even if she could hold onto it. Repeatedly she asked what day it was ("Saturday"), whether she had slept the day away and was it Sunday ("No, it's Saturday"), was it Sunday ("It's Saturday"). She liked the soup for lunch, but again I had to "drive" the spoon for her. A bit later in the afternoon I was summoned into the bathroom where Kaeli was trying to help Rory walk back to her room. The shaking was so bad, and her body so weak, she couldn't stay up even with the walker. So we (Kaeli and I) made the decision then and there that Rory was going to the ER. Even though she couldn't speak clearly, she was pretty forceful in not wanting to go to the ER. "It's just going to be a waste of money," ("That's what insurance is for") or "We already know what this is," ("This shaking is different") or "I don't want to waste the time or money" ("We're going"). We put clothes on her and worked together to get her out to the car. I dropped her off with Kaeli and then took Colton to work. By the time I got back to the ER they were still in triage, and the admitting doctor couldn't get her to respond verbally at all. We verified her medications, talked about the timeline, discussed her current treatments. After getting moved to a treatment room and helping get her gown on, the regular ER doctor attempted again to get Rory to answer his questions. Once or twice she was able to twitch her mouth when he asked her to smile, or shake her foot when requested to wiggle her toes. But she was completely unable to speak or open her eyes on her own.
He ordered a brain CT and MRI, wanting to verify or rule out a stroke. He also ordered an IV to be inserted, and notified the ultrasound team that they would probably be needed to get that line going. It was almost like a bad comedy show for awhile. The scan technician showed up first to get her imaging done, but then realized the IV hadn't been started yet so she said she'd come back later. A nurse came in to attempt to start an IV, but decided to wait for the ultrasound team. The scan tech came back again and decided they could do the MRI without the IV started, so they took care of that. One of the ultrasound IV techs stopped in but during the time that Rory was gone for the scan. After returning from the MRI, another nurse came in and actually tried to start the IV, but was unsuccessful and decided not to make a second attempt. The scan tech came back again and said they didn't need contrast after all, so she could do the CT without having the IV in place. The doctor stopped in again but while Rory was still out of the room. After returning from the second scan, Rory had a few minutes of clear lucidity and carried on a very normal and animated conversation with the nurse who said she was going to track down the doctor right then so he could get some information from Rory since she was able to verbalize. However, by the time he got to the room Rory had slipped back into her non-verbal mental state.
At the end of all of this, the doctor reported that both brain scans and urine test all came back normal, meaning he had ruled out all the "big" possible problems including stroke. There wasn't anything else he would learn from blood work, so there wasn't a need to continue trying for a line. He also said he wasn't worried about the body shaking, as it was likely stress-induced and there wasn't anything he could really do for her since she is allergic to the family of drugs (like Atavan) that they normally give to control tremors. He was encouraged that she did eventually regain lucidity which further confirmed she hadn't had a stroke, and hopefully would continue to recover her mental abilities. With that, we were sent back home.
More of the same on Sunday, with continued shakes and inability to put together coherent sentences. Our ward did a fast for several of the members of the ward going through various medical issues, and included Tyler (see other write-ups on that situation). After months of Rory enduring various types and levels of pain, I think I'm most grateful that for most of the past several weeks, she hasn't felt much pain at all. From last night I found a note that she had taken a Dilaudid, which I believe was the first in a long time. And by morning she was again reporting no pain at all. After a minor accident Sunday afternoon, she had the energy to have each of he kids come and sit with her in the bedroom to just talk. She was able to verbalize relatively well, and wanted to use that time and energy to spend with her children. I was tasked to send messages and emails to several of her doctors; would it be possible to move her full-body scan up on the schedule? what are the actual steps to take when she's ready for formal hospice? need to report the weekend's new symptoms and get more input.
So all of this weekend is the "storm" before we may finally get walloped with a real snowstorm tomorrow. Kelsianne went to bed with her PJs inside-out, so snow is guaranteed by morning. That might be the only guarantee we have; hang onto those you love while you can!
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