Sleeping Beauty is AWAKE!

When I came in this am, Alison was wide awake, cognitive and had some (limited) physical movement! She had not taken ANY meds since yesterday am. So she was not sedated today. They did say that Alison did not sleep last night and was “calling out as normal”. This am’s calling out (before I got there) was not in confusion but more wanting attention.

Yesterday, Alison had failed a swallow test during a speech therapy evaluation given problems Alison was having with swallowing. So they had stopped all food and liquid, including meds. So the last time she had had Depakote or Zyprex was yesterday am. Today, I watched a second swallow evaluation by speech therapy. Alison was successful in eating apple and thickened apple juice (but not straight water). But, while she can swallow, some fluids do stay in her throat, causing her to have to clear her throat. Given this, tomorrow they are going to have her do a barium swallow test to confirm she is able to swallow. So no food or liquid by mouth until she passes that test. In the meantime they are giving her IV fluids. When she does get cleared, the speech therapist said to NOT use a straw as the liquids go to the back of the throat, increasing the chances of swallowing wrong. Plus we are asked if she is talking with a wet or gurgling voice to encourage Alison to clear her throat.

I gave the speech therapist Alison’s recent eating and medication history. Previous to three weeks ago, Alison was eating solid foods and fluids with no problems (and feeding herself). About three weeks ago, when they had started the anti psychotic meds, she faced increasing difficulties. Five days ago, I saw her choke on water – at the point when they had just increased her Depakote and Zyprexa medication levels.

Reenie/Jimmy – can you also formally raise the following with the doctor when you talk to him/her? With the nurse and Speech therapist there, I asked them both to set up a plan where Alison is not caught in a Catch 22. When they allow her to start eating, they will restart her medications, causing her to become too sedated to swallow.

Later in the visit, given a slight increase in blood pressure, Alison was restarted on her medications – crushed and mixed with apple sauce. They did not give her Depakote since can't be crushed. I asked them to skip the am dose of Zyprexa until tonight. Hopefully with the Zyprexa, she will sleep tonight. But tomorrow?

It was a delight to spend TWO HOURS with her where we could converse and talk about her state of affairs. We called and talked with Reenie and Alison also face-timed with Amy. Alison made jokes with and faces at Amy's kids. She asked to see Stella and talked to Stella for a while. She told me Phil had come to visit yesterday and looks forward to seeing him again (today?). Alison could move her right arm and toes and has a little movement in her left arm although hurts due to edema due to lack of movement. I (slowly) massaged all her extremities and (gently) stretched her joints. When she is awake, she is good at giving feedback when it is too much. Afterward, Alison had greater range of motion in her right arm and can begin to grasp ever so slightly with her left arm. And she can raise her feet off the bed. Alison asked to have put up again her signs as well as the pictures in her room. “Grow Strong”, “You are Loved” and something like Be Quiet and Relax. So everyone who visits please also massage and strech her limbs. Don't worry, Alison does not break.

Alison and I made for a video of her for everyone but it cannot be uploaded to the blog. I am sending it out via email to Amy and Reenie and will ask them to forward it on (or email me if you'd like a copy ariedy@cox.net).

Reenie will be out for a visit Dec 15-18 when she will hopefully win legal control over Alison’s situation. Looking forward to it!!