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.

More of the Same

I visited Alison on Tuesday and Wednesday. She was frustrated, agitated, and uncomfortable. She was calling the nurse (bad) names and said the mean nurse was holding the nice nurse hostage so she wouldn't help Alison. 

She can find no peace in most moments it seems.  When I'm not there, she has the nurse call me and Alison tells me to come right away.  As soon as I arrive, she wants to call Andy or Reenie. If she's in bed she wants out, if she's sitting in her chair, she wants to get in bed.  She was demanding that I get the nurse my entire visit even though she had just been there.  And she has lost the politeness with me that, up until now, she was always able to surprisingly muster.  (I knew it was only a matter of time before this happened and I don't take it personally.) 

I was unsuccessful in calming her Tuesday. On Wednesday, I asked her if she wanted to listen to music. She said no, that it made her lungs hurt. I put it on anyway and she stopped screaming for a few minutes at least as I left. 

She is complaining about difficulty breathing and she is raspy. Her oxygen levels are normal though. 

She is having greater difficulty articulating and sometimes her words come out in a strained garble and she doesn't know it. She gets mad at me if I ask her to repeat it, saying she just said it. She seems to think she is speaking clearly.  Interesting. 

The physical therapy I have witnessed seems extremely short.  Alison appears to be somewhat willing to participate but then "digs in" and becomes impossible to manipulate, bringing the session to an immediate end.  

Some of this behavior could be a result of the medicine she is on.  I hope they can find the right formula for her to give her some relief from the mental anguish. 

Andy visited today and reported that it was a good day so hopefully she will post about that. 

Not a Good Day

Alison is really really confused today. She cannot find the right word and often just repeats what is said to her. Attention span is 30 seconds, not five minutes and she is in and out of sleep.

Unlike other days when I can calm her, she was anxious the whole time.  She is back to yelling during the day. She really does think that she can walk and that she is getting out today and going home.

I had a chance to talk with the "head nurse" who says she manages the floor.  She said that Alison has not stopped yelling for three weeks and that the meds have not yet made a difference.  As well, she reported that Alison cannot stand without two people and that trying to assist Alison is too painful for the staff .  I shared that I saw a marked difference this visit and questioned the side affects of seraquel.  Let's hope today's confused state is temporary.

Amy comes home and sees Alison tomorrow.  My fingers are crossed that Alison will be present for her.

More New Meds

When I showed up this morning, Alsion calmly told me she had been thrown in the brigg. In jail. Really. While I knew this was not the case, I knew something was up but it took some teasing to find out. Turns out that Alsion has gone back to screaming through the night. She said she wants out of there, she wants to walk, she wants it now. She is angry and frustrated. So she threw her plates too. So, they gave her Ativan IV to calm her. It put her in her "jail"... She and I talked that it is SAD that Alsion cannot have everything the way she wants it right away. That must be frustrating. But Alsion needs to look at it as a long road with improvement at each step. She needs to work on it AND she WILL get there. We also talked about not getting angry with people around her but being NICE to them because they can help her imrpove. The idea of using sugar instead of insults. Alison may have been scheduled to be moved but given the last two nights of lack of sleep, she is not a candidate to be moved. The hospital is working on anti-axiety meds to get it right. They want to stop Alison's perseveration on the negative. Next med they are now trying is a mood stabilizer called Seraquil. Mark and Dawn were there today along with another friend. Come visit. It is always fun, or at least entertaining!

More Progress

Confusion continues…  When I got there today Alison was crying.  It turns out she thinks she can walk and did not like that she was told she was not permitted to go outside.  I showed the staff how talking slowly and quietly calms Alison so she regains reality.  I then gave her a bite of the favorite bacon chocolate bar she had mentioned last visit.  I will dole out pieces each visit, not all at once.

I had arranged to have PT come when I was visiting Alison today.  They did have her “stand” again, this time 4 times.  The PT staff was heavily supporting her against the frame of the bed though.  After PT, Alison cried and said she was not “successful”.  I said no, she was SUCCESSFUL and that it takes baby steps.  She first has to rebuild her leg and core muscles so she can hold up her weight and then they will teach her to walk.

Other good news.  It looks like Alison slept through the night last night, without crying out all night. Maybe the new meds they are trying are helping her anxiety.  Hope it is more than a one day occurrence for her and the staff!

At one point, while Alison was sleeping a bit, I remembered that many of you do not know that the progress includes things we don't miss!  She is no longer screaming “OW” non-stop or using swear or derogatory words, the itching that drove her crazy is gone, and she has cut way back on calling “Help Me” over and over.

I have asked the nurse to write up that Alison has recurring pain in her left shoulder since she fell out of bed at South River (under her arm, close to where the bottom of the shoulder blade and ribs meet).  Today, perhaps because of the strain of the PT, Alison’s shoulder began to hurt a lot.  I also noticed that Alison has stopped using her left arm, perhaps because of the pain.  I hope the doctors investigate what is wrong as the CT (x-ray) taken when Alison first got to the hospital showed nothing.

I will head back again Saturday.  Does anyone want to do a phone or Facetime call with Alison?  Text my cell if you do (703) 201-6676.