Pre-Thanksving Visit

Wednesday (before Thanksgiving, sorry)

It was a busy am for Alison. She had a bath and was in the chair. While not as awake as last visit, she greeted me with joy. They have started to give her all her meds, including the ones that cannot be crushed.

While she was somewhat awake, she was anxious and a bit confused. While I was there, I talked both with a woman from palliative care and with the speech therapist who had done another evaluation that am. It turns out the barium test shows that Alison is not always aware when liquid goes into her lungs. They do not know if it is the medications or something else. Alison can manage thicker foods like pudding but not things like honey or water. So they have her on IV fluids with simple nutrition. They are in touch with Reenie about whether to go back to a stomach peg, use a temporary nostril feeding tube that has the risk of being pulled out, or stick with thickened foods. Or they can use some combination.

Alison does not want a stomach peg as I think she sees it as permanent and keeps her from eating anything. She really wants to start eating again as it is part of her joy with life. She talked to me about all the foods she wants – also hard as she knows that tomorrow is Thanksgiving! Reenie will address the followeing questions when she talks to the hospital: Is there a mix of nutritional solutions eg limited foods and feeding assistance? What is causing this as she was eating prior to the recent medication? Is the condition temporary? I have not yet heard the decision…..

Also, just for your enjoyment, I nearly threw Alison on the floor. She was in her chair and asked to sit up. In moving the chair, Alison nearly slipped off onto the floor. She yelled HELP while I held her in the chair until we got her chair reclined with the help of a nurse. Oh my.

"No More Monkeys Jumping on the Bed"

Sunday night:

Alison was awake and alert. What a difference. I tried to explain that we have been concerned about her meds and that Reenie was looking into it. I said I wasn't sure what the doctor said. Alison said "No more monkeys jumping on the bed".  Haha. 

Although she was talking, funny, had just watched the Patriots game, wanted/did talk to Philip, she had lots of moments of nonsensical talk...mean team of nurses, needs to get in the hallway, help me get out of bed, where are you staying?,etc.

With more clarity though, she was able to tell me that she can't swallow and that she didn't want to do the swallow test because she wouldn't be able to do it. And that she wants to do PT so she can walk again. 

A good visit overall.

Fast forward to Monday. Mary Pat was going to visit. I couldn't wait to hear her reaction to seeing the new (old) Alison.  I was surprised and saddened to hear that Mary Pat said Alison was worse than the last time she saw her. In the almost 3 hours she was there, Alison could not wake up except to mumble "Help me!" periodically. 

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."  

Some Perspective From Reenie

Hi Andy,

I told Jim about your concern about Alison's apparent setback(s) over the past several weeks.  He said that Alison's behavior and condition are not unexpected.  They can all arise from her many infections, long time hospitalization, and her brain injury.  He said that every positive development is a miracle.

I also remember being told at Hopkins to expect ups and downs -- over the course of days, weeks, months . (even over hours, which we certainly have experienced, and started experiencing even in the early days)

Love,
Reenie

Sleeping Beauty

When I arrived, Alison had fallen asleep sitting up. Truly asleep. There was no incoherent mumbling or non sequiturs of words nor calls out for help. It turns out that she had only gotten 5 hours of sleep last evening (still wonderful). But the previous night she had slept all night! I thought about waking her to spend time with her. I tried once. Alison smiled but did not wake up. When I asked her if she wanted to say something, she mumbled “I love you.” I decided to let sleeping dogs lie. She needs good sleep. It turns out they had given her Ativan this am but I am not sure what else to help her sleep. But I found out she has prescribed Zyprexia (replaced the Seraquil), and as needed: pain meds, Ativan and Haldol. I hope they are getting the pain meds better calibrated. I still worry that she is too sedated given how far backwards she has regressed. Her cognition and communications are is very short and scrambled and she is not moving physically. We need to keep her from getting physically weak due to lack of movement. Other updates: The hospital is still treated her for c-dif but Alison has normal movements now. Alison pulled out her (unused) feed tube last night. Remember that they said it would be ok to come out in 2 months and was a simple (self performed) procedure. Alison is back on solid food but is having to be fed by the staff as she is not able to feed herself.

Mellow

(This is from Friday..)

Alison was screaming this morning and then slept pretty much all day. I couldn't get any information from the nurses about why this was..up all the night before and/or sedated.  She was slightly more alert at dinner than she has been my last few visits.  Although she only had one eye open.  We had several semi-coherent conversations. And by that i mean she was speaking intelligbly but her sense of reality is warped.  She is still confused about a lot of things but clear on others. She thought she was in Texas and could not understand how she could possibly be in Maryland.  She cried twice because she misses Philip. We called him and that made her feel better.  She has completely lost her sense of humor.  She was concerned that I was talking to the nurse. She told me not to tell them anything.  Like what? I asked. Politics she said.  I told her my lips are sealed.

She said she has not had any physical therapy in the past few days.  She can move her arms and legs but movement/energy are definitely limited.   She hardly ate any dinner but was really thirsty. 

Sedated Mumbling

When I arrived Amy was also visiting. It was great to see her too!

Alison stayed in a constant semi-sleep state with her eyes closed, calling out mumbled words the whole time. Allison had no sleep last night. She had been given a sedative given how active her calling out had been all night. It's as if she's trying to sleep but keeps waking herself every 5-10 seconds by talking out loud about things going on inside her head, perhaps jumbled dreams? Everything she says are one or two words followed by non-sequiturs of mumbling.  

It is on the wall.
I want…
...my arm
Scary words
Old woman
I can't move them
Focus
She doesn't have it
...needs to be
My god!
No power
Did you find...
(and the one I like best) I am in Boston

In between, she frequently calls out "please help".  Bit she is not aware enough to tell you what she needs.... Music does not calm her.  They are thinking of giving an additional sedative to help her sleep.


Sent from my iPhone

Some Notes from Reenie

On October 9, Alison tested positive for MRSA.  Her most recent test was not positive.  But because she has a history of a positive result, she is in "isolation" -- all visitors are required to wear gown and gloves.  Natalie said that this requirement should have been in place since Oct. 9 (but it sounds like it has not been).

Today Alison tested positive for C-diff (a bacterial infection causing severe diarrhea when antibiotics have wiped out natural flora).  So she will be treated for that.

It seems wise for visitors to be careful about bringing food to Alison--and to check with the nurse(s) about what food is permissible -- in case that is making Alison sick (or sicker).

Appeasement

Sunday I came with tomato bisque, blueberry yogurt, and clementines. She loved it!!

She was watching Star Trek when I got there. She was quiet but very frightened and worried that spaceships were coming. She also said the nurse had punched her in the chest. 

She was very fretful the whole visit. Telling me to make sure I put stuff in the oven, make sure the fridge was on, tell so and so this, do that. Instead of trying to set her straight and bring her back to reality, I just kept saying ok. I promised her that I would take care of everything and that she didn't need to worry, that she has no responsibilities and can just relax.  She trusted that I would do all these things and an outburst/further anxiety were averted.  This is an approach I have not taken before. I am usually very straight with her.  It didn't feel completely right but it did placate her, and that was nice..for both of us!!!

Also, half way into my visit, the nurse said that Alison is still active with MRSA (an antibiotic resistant staph infection) and that all visitors need to wear a gown and gloves..every time. I noticed (as I was leaving) a sign on her door that says all visitors of this patient must check in with the nurse before entering.  

Claudette (Harford Terrace neighbor) visited Alison Sunday night. She was amazed by what she saw...Alison's progress!!!  She said that Alison said she was overwhelmed by the outpouring of love and cried. I am glad that she is aware of and can feel that love. 

Recent Visits 11/2 and 10/31

Kim, my twin sister, was in town and we visited Alison twice. Per below and from my previous blog, the meds they are trying to address Alison’s anxiety when she is alone are causing cognitive and physical set backs. On some days, she is back to the level when she fist got moved to South River and is unable to move or talk. They need to get the meds right ASAP for Alsion to get back on track with her recovery.

Below, are two blogs starting with the most recent visit.

Saturday Nov 2

They have started Alison on a new medicine to try to control her anxiety as she is still crying out whenever she is alone, day and night. From her sister Renee, I hear that the psychiatry staff is visiting her every day to assess the impacts.

BUT, in addition to the new anti-anxiety med, the head nurse, Stephanie, said they are sedating Allison. Today we find her VERY confused and not able to move her arms and legs except sometimes her right arm. She keeps saying she wants to go home. She keeps her eyes shut and is also having a hard time swallowing. We were able to feed to her butternut squash soup we brought from home. Can we find out what they said sedated her with please? And for how long? We had to feed her lunch and stuck to apple sauce, soups and ice cream – things that were easy to swallow.

Thur Oct 31

When we first arrived, Alison was confused but much less so than two days ago when she first was put on Seraquil. It appears she is acclimatizing to the Seraquil. She knew Kim immediately and quickly settled down with us. That is not to say that the meds are not confusing her. Alison still asks for us to sit her up so she can “walk”.

She (and the nursing staff) said she had just had a visit from a lawyer who was presenting Alison papers to allow Renee to become her legal custodian.

As previously reported, Alison has been using her left arm less and less until now there is very little (no) movement. Kim, a physical massage therapist, worked with Alison very slowly to find out if Alison’s left shoulder was frozen from the fall two months ago. We helped Alison move onto her right side and placed a pillow along her front, between her legs and along her back for comfort. The Knim slowly moved her arm to loosen the shoulder joint. Alison kept reassuring Kim that it did not hurt but felt stretched. After 10 minutes of Kim’s work, Alison could against begin to move her left arm. I will need to teach Kim’s technique to Amy so that we can keep Alison ambidextrous.

And thanks to Mary Pat for visiting again. Mary Pat has been sick for 3 weeks but felt well enough for a visit.