8-3-2021 The difference between a sad night and great day

(Tricia)

After we left Linda last night, I thought this was going to be a very different blog post. Last night, we talked to her for a couple of hours, and in that time, sometimes she could speak clearly and sometimes her speech was muddled. (At one point, she apologized for "not bringing me the video of the 'slime dance' as she had promised"...if only there were a way to know what she really meant to say!) 

On a sadder note, she said several times that she wanted to go home, and that she didn't understand why she had to stay here. I explained that she needed to be here so that she can get stronger, and that if she worked with the physical therapists every day, they would help her get home. But that seemed only to depress her further. 

To try to distract her, I did a couple activities with her, including one in which I placed a group of angels in front of her--these are angels she had crocheted herself and given me as gifts over the years. I asked her to reach out and grab an angel of a particular color, to work on coordination and spatial awareness. She had a little trouble distinguishing between red and gold (she said they were both "red," and when I asked if she saw difference, she said the red one was "redder"). But, otherwise, she was right every time. 

 

Linda's Christmas angels--my favorite Christmas decorations turned brain-training game!

In another activity, I gave her Scrabble letter tiles and asked her to arrange them to spell certain words, and it was interesting to see how she was perceiving the tiles. For instance, at one point, she thought the tiles "T," "E," and "N" spelled "ten" whether the tiles were ordered TEN, NET, TNE, or ETN.  

She also confused the numeric point values on the tiles as letters ("1" looked like an "L" and "3" looked like a "B"). That added confusion, so now I know not to use Scrabble tiles for this any more!

But at the end of the evening, what I could not get out of my mind is how defeated she looked and sounded because she could not go home. As we drove home, I needed Ed to remind me of how much more interactive she had been, because I felt just as defeated as she did. I thought that would be the subject of this update.

But then I went back to visit Linda this morning. I wanted to be there during the day so I could meet her speech pathologist and physical therapists and see how she was during the day. I fully expected that she would be sleeping most of the morning. But when I arrived around 9:00, the physical therapists were already getting her up and into the wheelchair to take her to physical therapy, where they helped her walk several steps. Then, she was wide awake, and the nurse on duty asked if I'd like to take her out to the back garden area. We sat outside for a while, in spite of the lawn service man using his leaf blower! (Such incredibly bad timing for Linda's first time outside.)  Even with the noise, though, Linda said she enjoyed being outside--although she added that she thought it was "surreal" that she was here like this.  I completely agreed with her on that.

Then, we went back inside, and I asked Linda if she'd like to go to the common area, which is the "hub" of the facility, a hotel-style great room where the residents eat dinner and watch television. Linda and I sat there and watched the local news, as well as several Olympic events. She commented on the beauty of the horses during the equestrian competition, and we both wondered why the front riders dropped back in the women's cycling team sprint. 

Linda then asked if she could have a soda, and I was thrilled that, for the first time, she could actually have one. I ran to ask for some Diet Coke and ice--when she drank it, I asked her how it tasted. Her answer? "Ecstatic!" She enjoyed the heck out of that Diet Coke!

Soon, Paula, the speech pathologist, found us, and was thrilled to find Linda awake and talking. Paula is the one is evaluating Linda to make sure she can swallow safely without anything going down the wrong way and into the lungs. As a test, she gave Linda a bag of chips to eat, and Paula was delighted when Linda was able to eat them on her own. Linda then asked Paula, "What are the next steps for me here? I don't want this to happen again." She and Paula had a conversation about her care and what might lie ahead. As I listened, I was also "ecstatic"!

At one point, though, Paula said that Linda's case was so unusual that they really couldn't predict the path of her recovery. But what she could say is that Linda has continued to surprise them with her progress so far. 

After Paula left us, Karl, the nutritionist, stopped to talk to us. He told us that in the next 24 hours they are going to start transitioning Linda to regular meals, with the goal of stopping her tube feeding altogether in the next few days. (Lunch, however, was still pureed food--believe me, there is nothing less appetizing than pureed chicken, pureed canned carrots, and a pureed dinner roll. Ugh. Linda agrees.)  

Lunch, pureed edition--weaning off a feeding tube is not for sissies (ugh)

Later, when we were back in Linda's room, Linda was incredibly tired and wanted to rest. As she grows more tired, her speech becomes more muddled, but that's to be expected. While we waited for the nurses to come in to transfer her, she wanted so badly to get up and get herself into bed. But she simply didn't have the strength. That's the next big goal.

She might still have a way to go to develop her physical strength, but the difference between last night and this morning was remarkable. I do have to remind myself that coma recovery can be up and down--we might come back tomorrow and Linda might have a down day. But from our perspective, and from the perspective of the medical staff, it was a really, really good day.