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!!

Mary Pat Visited Yesterday

She says she is "stunned" by Alison's decline since she last saw her a few weeks ago. Wonders if she has had another stroke and/or more seizures or if it is the medicine she is on. 

Reenie is scheduled to speak to the doctor today regarding Alison's medicine. 

I decided to NOT post video of Alison out of respect for her privacy. 

Just Fell Asleep

..right as I got here. :(

Will try to get back later today. 

15 Minutes of Alison

"Hi bobo, Merry Christmas". That is how Alison greeted me at today's visit! She was cognizant, with a sense of humor! She had just been moved to a chair and had taken her meds. She knows she has been out of it, maybe because of what Amy told her last visit. I told her she was getting used to the meds and will be able to do more each day. She is only able to move her right arm slightly (no left arm or legs). We used her breathing exercise devices once but only achieved only modest levels. She shared she had arm and leg bodies pains, perhaps from lack of movement? So I massaged and stretched her limbs.

We were able to talk about 15 minutes but then she drifted back toward sleep. At that point, Alison began to mutter and started crying out again for help. But now she is too medicated or weak to yell loudly.. “Mommy help.” “Can't do anything right.” “…back to normal.” “Be the same.” “Help me.” Can't come to your house?”

From the nurse I learned that Alison had slept all night but that she was very agitated yesterday. The doctor has been monitoring the levels of medication in her blood. Alison has not attained the desired level of Depakote or Zeprexa as she may be metabolizing the meds faster. Today they decided to increase the dosage of these two meds. When I first arrived, they had just given her the higher dosage of Depakote but not the Zeprexa yet. And then she fell asleep. I talked with the PA about the trade-off between the levels of medication vs Alison’s inability to be cognitive or move. How long do the meds take to be effective and lose their sleepiness affect? Is there a way to differentiate between day and night time levels?

Also as FYI, Alison still has congestion in her chest. They are having her use the breathing exercise devices every 4 hours but it is hard when she is so sleepy. A couple of times, when she was drinking water, she ended up choking on the water (does she forget to finish swallowing?).

Finally Awake!!!

I had Aaron go by the hospital today at 4. Alison was asleep. We went back at 8pm and found her awake! Finally!  It's been a week since I've had this much interaction with her. 

- I can't move my legs. At all. I can barely move.

- Throw my trash away. Stop f***ing with me.

- You have the list in case I go somewhere? Reenie, my brother in law, peter. Off the face of this earth..

- They are moving me soon. 

- Do I look like I've lost weight? How much? A lot?

- call Reenie. 

- Do you promise you'll come tomorrow?

These are just a few of the things she said to me.  Her speech is difficult to understand. And she got very frustrated when I couldn't get it. Her thoughts seemed pretty clear though. She is sad about her situation...really upset about her lack of movement. 

Aaron told her a joke. She didn't laugh but she got it. Her sense of humor is somewhat lacking but her sarcasm (with Aaron at least) was intact. 

She has a pained (contorted) look on her face and was yelling out a little but was calm for the most part. She cried when I told her Andy had visited. She didn't know because she had been sleeping. She said, "She looks out for me".

Another Miss (and Info)

First Alison has moved to room 304. They did this so she would not be constantly stimulated by people walking by her room.

Allison was deep asleep today. I did have a chance to talk to the head nurse, Stephanie. Stephanie said that the Zeprexa is beginning to be effective as Alison's mood is stabilizing. She only has fewer periods of calling out and only for an hour. Per the nurse, when Alison is awake, she is able to respond to communications. And she took her Meds as requested. On tues, the nurse said she even knew the name of her pt person. But we are not seeing long periods of detailed discussion nor physical movement like 3-4 weeks ago. I hate the trade offs.

Today Allison was awake most of the morning and they say she is sleeping at night. But before I arrived, she had fallen asleep after being given pain meds for her bottom (but not the optional haldol or Ativan). The C-Dif still has not cleared. It can take multiple weeks.

Yesterday they did an xray of Alison's lungs and found Atalectasis. This is where she is not using her lungs sufficiently and they are shrinking. They tried to start therapy today to reverse this but Alison was too asleep. I also learned that Alison has refused PT enough times that she is no longer receiving it (again). Without the feeding peg, Alison needs to eat. But she is not always awake to eat. I worry about her nutrition. The hospital does have Boost Plus in her room to help supplement her nutrition.

I asked if there was some better time in the day to come and visit, where the probability of Alison being awake would be better. They said that generally the mornings are better than the afternoons, but one never knows whether it's early morning or mid morning (if at all). I will try to better plan my visits around her pain medication.

As I left I said "Alison you know how much I love you." She responded in a mumble "I love you too".

Out Cold

I am still trying to figure out to post a video from yesterday to show how whacked out Alison is now. I don't know if I could find the words to adequately describe it. 

Today, however, I could not wake her up. Her nurse said that when she is awake, she is screaming. She is able to eat with assistance. He said, "We aren't doing anything for her.. Just waiting for her sister to get guardianship."