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.