7-25-2021 The "expediency" of tube-feeding, and other conversation starters

(Tricia's perspective)

When I arrived, Marilyn was just leaving (we have been splitting our visits to spend more cumulative time with Linda). Marilyn had just had a nice chat with one of the residents over the fact that they were both wearing St. Louis Cardinals shirts. After Marilyn left, I walked back and saw the woman Marilyn had mentioned, sitting in a wheelchair, alongside two other residents as they watched the Cardinals game in a common area. I told her, "I know Marilyn was just talking to you about your shirt--I love it, too!" and she gave me a big smile and said, "Thank you! And they're up 9 to 3!" It seems like a nice little community at NHC.

When we first knew that Linda would need treatment at a skilled nursing facility, we had been worried, given the negative connotations surrounding nursing homes. But, so far, the staff seems very nice, and the residents who can move about are provided plenty of activities and opportunities to interact. We’re of course concerned about what might happen if there is a resurgence of COVID in the area and visitors are no longer allowed for residents' safety. But right now, we can visit Linda at any time, which has been wonderful.

Talking More and More

When I got to Linda's room, she was still asleep. But after about 30 minutes, I looked over to see her wide awake. When I went over to ask her how she was doing, she looked past me to the clock and said, "Is it really 3:13?" When I told her that yes, she had slept the day away, she rolled her eyes and said, "Oh brother," as if to say, "Can't believe I slept that late."

Her speech is getting better every day. At St. Luke's, the psychiatrist prescribed her depakote, a drug normally used to treat epileptic seizures or bipolar disorder. The psychiatrist explained that he was trying it off-label because the mechanism by which the drug works might improve her ability to speak. Judging by results, he could be right.

At one point, she even asked, "When's lunch?" It was the first time she wanted to eat. I explained that she wouldn't be able to eat or drink until she was able to pass a "swallow study," to make sure she can swallow normally. But before they can do the study, she will have to be able to remain awake for at least a few hours a day. I pointed to the bottle of liquid nutrients going into her feeding tube, and said, "Until you can eat, you're at least getting fed a liquid diet, although I know that's not ideal." She shrugged and responded with perhaps her funniest comment of the day, "Well, it is more expedient that way." So, we know that her vocabulary is intact!

Her biggest challenges in her recovery are now her strength, motor skills, and memory. She still has a hard time grasping objects; she cannot judge spatial distances yet or sit up or stand on her own. However, in the second funniest moment of the day, I asked if she hoped she might walk this week. Her response, was "No." I asked, "Why not?" In an obviously irritated tone, she answered, "Because I can already walk." Hey, I said, if you can walk, show the therapists that trick tomorrow and they will be infinitely impressed!

Focusing on the Progress

All this is to say that she still has a long way to go. But I must remind myself how far she's come: In the first week, after the EEG showed only "slow brain waves," the hospitalist at Ozarks Medical tried very hard not to give us much hope for a chance of recovery. He asked us whether we knew what her wishes were and whether we wanted to continue treatment. 

But it was also there that Linda, still in an apparent coma, pressed our hands with her feet when we asked her to. When we told the doctor and nurses what had happened, they clearly thought we were seeing what we wanted to see--I'm sure it's in the medical textbooks that families will grasp at any sign that their loved ones are getting better, so I get that. I don't like it, but I get it.

Then, it was just two weeks ago (Saturday evening, July 10) that she opened her eyes and squeezed our hands for the first time. A few days after that she was able to nod and shake her head to answer "yes" or "no" to questions, and nearly a week later when she first tried to talk and was visibly frustrated when she couldn't form the words.

Even so, it was just two days ago, Friday, when Amy, NHC’s nurse practitioner, spoke with us to get Linda's history. Near the end of the conversation, she said, "I do need to be completely straightforward with you. It's rare that someone of Linda's age can bounce back from this. I'd love her to prove me wrong, but you should prepare yourselves for the possibility that this is going to be her baseline." Like many of Linda's doctors, she had only seen her asleep and apparently only minimally conscious.

And, yet, this afternoon, I was able to talk with Linda and understand most of her responses. She read the clock, used the word "expedient" correctly in a sentence, and laughed when a prescription drug add came on, because she said she thought "Skyrizi" was a funny name. (The television was on mute, and she was able to read the close captioning.) Each day, more of her trademark sense of humor is coming back: sly, dry, and quiet. And today she and I were able to spend an hour watching a delightfully formulaic "Christmas in July" Hallmark movie together ("A Royal Christmas" with Lacey Chabert--which I've actually seen before and recommend it as one of the better films in the cheesy Hallmark movie genre!)

She has come farther than the doctors thought possible early on. If there's one thing we have learned in this experience, it's that when coma patients do recover, they all will recover at their own pace. We found this page and this page useful in helping us know what to look for as signs of recovery and how long any recovery might take. So far, she has been demonstrating these stages of wakefulness, and seems to be on track for the six- to eight-week timetable for at least partial recovery.

We don't know how much farther she will progress, or how fast. But at this point we are hoping that she really does prove Amy wrong.