Another Little Step Forward

EVERYONE: to facilitate communications, please text my cell phone if you go for a visit c 703.201.6676 so we can coordinate coverage (thanks Christina for the comment to Amy’s last blog about your visit). Also, the social worker was there during my visit talking about outplacement. So call before you go to make sure Alison has not yet been moved. Nursing on 13East is (410) 328-3095.

Alison was asleep when I arrived. So I started talking to her and asked her to wake up. And then I took out my iPhone and I started playing music for her while I asked her to wake up. The playlist I first selected was “Soul Music”. Alison opened her eyes and saw it was me. I asked her if she liked the music. And she said "too old". I knew we were going to have a good day.

Remember how last visit I rated Alison at a level 3 on a scale of 1 to 10 in terms of her cognitive awareness? Well today, we got up to a 7 or even an 8. [Remember the 10 at the top of the scale is Alison's cognitive ability post the stroke….] As Alison woke up, the morning started at a 4 or 5. Alison could give me single word responses to questions I framed for her. When she said ouch, I'd say ouch or itch. She’d say itch. I’d ask nose. She’d say no. I asked neck. She said yes. I itched her neck. I asked better. She said yes. It was a modified version of Simon Says.

Over the course of the time with her, she became more alert and could give me multiword responses. She also raised new topics on her own (like that she had watched a movie on TV and did not want to watch the Olympics)!! She did show humor a number of times. She kidded me about bossing around the nurses. She showed her irritation when I tried to take a video of her - "Stop smirking" and "you are annoying". She also said, “My eye hurts but I can handle it”.

Of course, the main issue I focused on was the status of the stomach peg. It turns out that there have been potential complications slowing the stomach peg – per nursing, Allison has had uneven blood pressure and potential seizures (turned out not).

I then talked at length with Alison about the stomach peg. When I first asked her, she said she did NOT want the stomach peg. After me asking additional questions, it turns out she is afraid of the pain. We then spent a lot of time talking about how the stomach peg would help her get strong, like when she was first at South River. I also talked about how this time she could still eat; the peg would make sure she got sufficient nutrients. I then repeatedly asked her to make a choice as to which was more important to her: to have no pain or to live and grow stronger. I told her it was her choice, not mine. At first she kept saying both. I told her she had to choose one or the other, and she replied not dying was more important.

The doctor on the floor then came in. I shared Alison’s and my discussion. The doc says they understand that Alison may say she doesn't want the stomach peg but that she really does. The thing that is holding up putting in the stomach peg is the G.I. team wants Alison to have us psychological evaluation to confirm that the stomach peg is appropriate. Because I am the cynic that I am, I think they want the consult so they can create a cognitive benchmark for use in evaluating any potential post surgery issues. So it looks like the stomach peg may go in tomorrow. I then called Mary Pat to share the update and MP will try to go Wed post surgery to check on Alison. Psych came in to do the evaluation as I was leaving.

I went on a search in the hospital for chocolate mousse, hot mashed potatoes with butter and salt, and anything else that might entice her to eat. It turns out she really likes the cafeteria’s shrimp bisque soup into which I had to put some mashed potatoes to thicken it from now nectar to honey consistency. She ate five or six spoonfuls of the soup before I had to leave. And she kept asking the person doing the psych evaluation for more (instead of answering the questions). Poor resident…. This was the most I have seen Alison eat in the last two weeks, other than a spoonful of applesauce with medicine in it. The nurse said she would have somebody feed Alison the rest of the soup mixed with the mashed potatoes.

We did another cap "hair shampoo" and cut her fingernails. Only did modest neck, arm and leg messages. Physically, there is a little more movement in the right arm and the right foot moves sometimes (not on command). The hospital is going to have a wound nurse come to treat Alison's modestly increasing bottom sores.

I am not sure when I can next go as I have in-laws in town next weekend. It might be Monday in 7 days.