Alison's Hair

I bought an inflatable hair wash basin. I am going to attempt it tomorrow when I visit.  Should be an adventure!!  I hope it works.  

Tuesday and Thursday End of Feb

I got a call from Mary Pat that she had seen Alison on Tuesday. She said that Alison was alert and very together. Alison asked to eat the rest of the lobster bisque and the Aluete cheese spread I had left at my last visit. She and Mary Pat talked about Stella and cried appropriately. Mary Pat was very happy to find Alison in such stable and good shape.

Today I visited Alison. On the drive up, I talked to nursing and they said that Alison had slept through the night. As well they started using a Jerry chair with Alison yesterday. This is good news as it will get Alison sitting up again. But Alsion is not strong enough to sit upright in a normal chair plus faces the risk of throwing herself out of it, so they have started back with the Jerry chair. And they have to use a sling to move her to and from the bed - no more pivoting off the bed.

While I was with her, Alison got visits from both PT and speech. They have her moving her right leg and arm, although it is only modest movement. And they are asking her to move her left limbs as well. There are signs that Alison will be able to regain some left side movement. Speech therapy watched me give Alison more lobster bisque and herb cream cheese. They said to remind Alison with each bite to swallow strongly and to remind her twice with each bite to make sure nothing is left in her throat. Alison said the floor staff is not feeding her any food because "she did not earn it". I have asked speech therapy to follow-up to make sure that withholding Alison’s “pleasure food” is not being used as a punishment for Alison. Alison still gets peg tube feeding. As well, this is the third time I have requested a real shampoo for Alison!! It will require work on their part to get her into a real shower. Maybe now she is again using a wheel chair?

While Alison was very cognizant and able to participate in a dialogue with me, she has returned to saying "I want to die". She does this when she is asked to do something for herself like wipe her own mouth or exercise her own limbs. Perhaps it is due to the realization of how far she has to go? Not wanting to do the work? I just remind her that a) she needs to work on her own recovery, b) it will take work and c) she can get better.

As always, please come visit Alison. I am finding the best time is after 1130. I call ahead to make sure they have gotten her up. Alison also asked if somebody would contact Phillip and ask him to come for a visit. If you want to feed Alison, I have left more food in the 4th floor refrigerator with her name on it (the staff can get it for you). There are cups, spoons, salt and pepper in the top right-hand drawer of her dressers. Remember, she can NOT drink plain fluids; they need to be thickened with a powder which is at the nursing station - honey (glop glop) vs nectar (drip drip) consistency please.

Sunday

I did see Alison yesterday. I will try to get a more detailed post up soon. 

I signed her up for a hair cut (Alison's request) through the activity director. By signing up, I mean I wrote Alison's name on a scrap of paper the woman handed me.  Someone might need to follow up on this. I got the impression that it could be a few weeks before the hair guy would be back around. 

She was lucid/normal/alert but sad about Stella. 

All Stable

Alison has moved back to her old room, 407A. While it is more cramped space, she does have her old roommate who watches over Alison and creates activity. It is still a pain to try to crank Alison's bed given the limited space. Let's see how the roommate situation goes....

After talking with Amy, I shared with Alison that Stella was in distress and was going to see a vet today. I explained that Stella could not move and it would be best to let her go. Per input from Amy, I shared how happy Stella had been these last few months with fellow dogs. Alison said that Stella would be happy to see K....(? a dog that had already passed). But she did cry. So we got up the courage and facetimed Stella to wish her well on her jounrey. Both Alsion and Amy are taking it bad.

They say Alison is eating her honey thick food PLUS getting a stomach peg feeding. When I saw Alison, she first asked if I had brought her butternut squash soup (a fav) or chocolate. I told her I brought lobster bisque and we still had aluette herbed chesse. Alsion would eat a bit of each, then her back would hurts so we would crank her bed flat, then she'd ask to eat again so we'd crank her back up. After about 5 of these up and downs, I told her more food would have to wait. I did raid the kitchen in the basement and have stocked the top drawer of Alison's chest of drawers with salt and pepper - please season her meal food whenever you have a chance. I got them to give me a container of the thickening powder to turn drinks into honey thick fluids -- the container has to be kept at the nurse's station and the cups are in her top drawer. Get OJ from the medicine cart or I squirrelled away 3 ginger ales into "an Alsion special foods paper bag" that is kept in the nursing area's refrigerator, ask for it. That is also where the aluete chesse and chocolate syrup are kept. As I left today, Alsion asked if she could "have some more?" Very Oliver Twist.

Other things: I have escalted my request to get Alison a real hair shampoo. Her scalp really needs a cleaning as it is now very crusty. Please also push teh facility to do this. Alison said that PT has been working with her. She showed how PT had asked her to lift her left arm with support from her right arm, and move her right leg. I suggested to Alsion that she wiggle her left toe even if she could(not yet) lift her left leg. Good news that PT is having Alsion work. BUT, Alison does NOT have a wheel chair yet. I am not sure if PT thinks that Alsion cannot sit in one because Alsion does not have the coordination to release a needed lap belt used to keep her from falling from the chair). Can someone talk on Monday with Lakshmi who runs PT to see how to move this forward? Alison, as I left, became frantic that they would not let her out of bed....

Amy plans to go Sunday afternoon. Mary Pat either Sunday or Monday. Sorry to be late with my blog from this morning!

The room needs a wall clock, she could do with socks. You know that LVOE is most important!

Alison's Move Back to BridgePark

Alison got moved back to BridgePark last night so I went to see her today to get her resettled. She is now in room 311 and has the more spacious and sunny window bed. She was awake and cognizant when I arrived. And immediate asked for my “Help”. When I asked her to tell me what she needed, she imediately was able to tell me what and responded with “Heel”. Turns out she had lain on her back in bed so long without foam heel pads that her heel hurt from pressure on the airbed. So I put a pillow under her legs and massaged her heels. Tada, no more “Help”!

I did spend time today massaging and moving Alison’s limbs as they have stiffened from lack of movement during her 2-3 week stay at U of MD without rehab. As I was doing it, she would say “Ouch”. I would ask if it was #1 (right hand) or #2 (left hand) that caused the pain and she would tell me which. I would aask if it was big or little pain and she’d say little. I did share with her that she was becoming like the Princess and the Pea, feeling everything! When I also shared that Kim (my twin sitter, a physical massage therapist) would do it sooo much better than me, Alison said that I should not be “Self Deprecating”. I then commended her on her great choice of words, and she in turn said “It runs in the family”. So overall, we had a good time working with each other and playing.

Alison did beg for me to take her home with me. I explained that she still needs 7x24 hour care that I cannot do. I explained that she can and will grow stronger. She should set a goal to be able to move around with a walker or wheel chair. When asked, she said she understood. At one point later, she then said she wished she would be able to go home with Aaron and Amy.

Of course, when I asked the rehab unit for Alison’s belongings, they were nowhere to be found. After much searching, we found some of them under piles of clothes in the closets of her old room. In her new room's closet there are many T shirts, 3 long sleeved warm shirts, 3 pretty shirts, 2 leggings, one short, and 2 pairs of shoes. Some are dirty so I have asked nursing to get her dirty laundry washed so she can wear those clothes. We also found her photos, Raven hat and xmas decorations. No bras or socks. What else are we missing? Bring old sports bras if you have them IF they hook in the front or back. And socks. And thumb tacks….

Alison is yearning to eat! I asked for Speech Therapy to see her today to re-evaluate whether Alison is ok to eat honey thick food and drink. They have to do it each time she comes back to the unit. Until they do that, she can only use the stomach peg. I put a bag of Alison treats in the fridge for her – coffee Greek yogurt with chocolate, aluette creamed cheese and chocolate syrup to make drinks tasty. She asked for creamed butternut squash soup and liver too (she knows me too well)!

Alison's Address

BridgePark Health Care Center 
4017 Liberty Heights Ave
Baltimore, MD 21207 
410-542-5306

Back to BridgePark

Alison was set to return to BridgePark this evening. I haven't heard anything but assume she has made it. No room number as of yet. Her peg tube is in and the doctors say she is alert. 

I got a call from Claudette (Harford Terrace neighbor). She intends to visit soon. 

I know Andy hope to get there this week and so hopefully we will get a thorough first hand account from her. 

Mary Pat Info

- Mary Pat saw Alison late this afternoon
- While the stomach peg is in, there is still some (normal) bleeding BUT no real pain
- Alison has not yet been fed with stomach peg so any cognitive or physical improvement is just "cause"
- Alison though she was going home this evening (home not rehab) and created a little scene when she was told it was not true....
Oh my.

And Two Steps Forward

I just called the hospital and Alison now has the stomach peg. The nurse would not provide me the info over the phone as I was not "on the list" (they only have room for 3 names). But the nurse asked if I would want to talk directly with Alison. What a novel concept... So they transferred my call into the room and put Alison on. She said clearly, "Hi Andy, how are you?" Yippee! When asked, Alison said the peg was in and that it still hurt but that yes, she was feeling stronger with food. The nurse said that she looked better too! And the bottom errosions are clearning up.

Soo - call the hospital 13East (410) 328-3095 and ask if Alsion is awake and can take your call. Share how much you love her, how proud you are of her for doing the peg, and cheer her on. If you go visit, she likes liver pate, thick soups and chocolate mouse (as long as they are smooth). Mary Pat may go today, if she can. I will provide an update if MP shares info with me.

Another Little Step Forward

EVERYONE: to facilitate communications, please text my cell phone if you go for a visit c 703.201.6676 so we can coordinate coverage (thanks Christina for the comment to Amy’s last blog about your visit). Also, the social worker was there during my visit talking about outplacement. So call before you go to make sure Alison has not yet been moved. Nursing on 13East is (410) 328-3095.

Alison was asleep when I arrived. So I started talking to her and asked her to wake up. And then I took out my iPhone and I started playing music for her while I asked her to wake up. The playlist I first selected was “Soul Music”. Alison opened her eyes and saw it was me. I asked her if she liked the music. And she said "too old". I knew we were going to have a good day.

Remember how last visit I rated Alison at a level 3 on a scale of 1 to 10 in terms of her cognitive awareness? Well today, we got up to a 7 or even an 8. [Remember the 10 at the top of the scale is Alison's cognitive ability post the stroke….] As Alison woke up, the morning started at a 4 or 5. Alison could give me single word responses to questions I framed for her. When she said ouch, I'd say ouch or itch. She’d say itch. I’d ask nose. She’d say no. I asked neck. She said yes. I itched her neck. I asked better. She said yes. It was a modified version of Simon Says.

Over the course of the time with her, she became more alert and could give me multiword responses. She also raised new topics on her own (like that she had watched a movie on TV and did not want to watch the Olympics)!! She did show humor a number of times. She kidded me about bossing around the nurses. She showed her irritation when I tried to take a video of her - "Stop smirking" and "you are annoying". She also said, “My eye hurts but I can handle it”.

Of course, the main issue I focused on was the status of the stomach peg. It turns out that there have been potential complications slowing the stomach peg – per nursing, Allison has had uneven blood pressure and potential seizures (turned out not).

I then talked at length with Alison about the stomach peg. When I first asked her, she said she did NOT want the stomach peg. After me asking additional questions, it turns out she is afraid of the pain. We then spent a lot of time talking about how the stomach peg would help her get strong, like when she was first at South River. I also talked about how this time she could still eat; the peg would make sure she got sufficient nutrients. I then repeatedly asked her to make a choice as to which was more important to her: to have no pain or to live and grow stronger. I told her it was her choice, not mine. At first she kept saying both. I told her she had to choose one or the other, and she replied not dying was more important.

The doctor on the floor then came in. I shared Alison’s and my discussion. The doc says they understand that Alison may say she doesn't want the stomach peg but that she really does. The thing that is holding up putting in the stomach peg is the G.I. team wants Alison to have us psychological evaluation to confirm that the stomach peg is appropriate. Because I am the cynic that I am, I think they want the consult so they can create a cognitive benchmark for use in evaluating any potential post surgery issues. So it looks like the stomach peg may go in tomorrow. I then called Mary Pat to share the update and MP will try to go Wed post surgery to check on Alison. Psych came in to do the evaluation as I was leaving.

I went on a search in the hospital for chocolate mousse, hot mashed potatoes with butter and salt, and anything else that might entice her to eat. It turns out she really likes the cafeteria’s shrimp bisque soup into which I had to put some mashed potatoes to thicken it from now nectar to honey consistency. She ate five or six spoonfuls of the soup before I had to leave. And she kept asking the person doing the psych evaluation for more (instead of answering the questions). Poor resident…. This was the most I have seen Alison eat in the last two weeks, other than a spoonful of applesauce with medicine in it. The nurse said she would have somebody feed Alison the rest of the soup mixed with the mashed potatoes.

We did another cap "hair shampoo" and cut her fingernails. Only did modest neck, arm and leg messages. Physically, there is a little more movement in the right arm and the right foot moves sometimes (not on command). The hospital is going to have a wound nurse come to treat Alison's modestly increasing bottom sores.

I am not sure when I can next go as I have in-laws in town next weekend. It might be Monday in 7 days.

Sunday at UM

Alison is in 13East Room 20. 

She was awake but drowsy and dozed off a few times. I asked her if she had her surgery to have the peg tube reinserted. She said she had refused it. I asked why. She said she didn't want it (at the time) but now she doesn't care.  She did say that she does not want to eat. I didn't get a clear answer as to why not but my guess would be because of what they are serving her. 

I guess she could be described as alert. Our conversations never really went anywhere.  Most of the time she wouldn't respond. She was very distracted by the nature show (no sound) that was on the TV. She was able to tell me that she hadn't had any visitors today. When I asked if she knew where she was she said Greenmount. Maybe she meant Greene Street? Not sure about that. I asked her if she remembered my ceramic jar that we used to put our wishes in. She said no. I told her I was emptying it out recently and I found one of her wishes: "to have enough money to finish the garage". She was amazed by that. "Really????"  I told her to think of a new wish for me to put in there for her. She couldn't think of anything or maybe she just couldn't express it. 

She could wiggle her legs a little and was pawing at her nose with her right hand like she always does. She asked me to prop her up and her left shoulder was not hurting. 

I asked her if she wanted her hair cut short like she used to have it. She said no, she wants to grow it out. 

She is looking forward to a visit from Andy. 

Only Limited Forward Progress

I went to see Alison today (Tuesday) at U of MD Hospital, 6 days after my last post about the MICU (last Wednesday). After a week in Medical ICU, Alison was moved on Sunday(?) to the North Hospital floor 13 East Room 20. She is in a single as she is still calling out, though I heard she slept last night until 6am. That did not help with her level of awareness today. Her speech is very muddled ie she is not enunciating and is repeating the same thing over and over. They have placed a nurse's aide in Alison's room "full-time" last night and today to see if they could quiet Alison down.

Alison's temperature is down. Per an email from Reenie, Alison's vitals are stable. Her BP had been fluctuating but is under control now. Her temperature has been
under 37.5 (99.4). EKG, CT scan of her head all normal. Nursing said Alison did not appear to be in pain. I got them to again brush her teeth and we did a "hair wash in a cap" - She really liked the warmth from the fluid in the cap and the head massage but she really could use a real shampoo. Everyone, ask for one to do with Alison when you are there.

We had a visit from Speech Therapy who had performed a third barium test barium test and cleared Alison for honey foods. So she had started to eat. But this morning, Alison was so sleepy that nursing restricted her to no food again and had speech therapy return. Nursing is concerned about whether Alison will swallow the wrong way. Given that Alison isn't eating today, she is not being given meds. So the vicious cycle continues.

The G.I. department also came in and are starting their assessment for the peg tube now - they had to wait until Alison's temperature and blood pressure were stable. It may be put in 2-3 days once they talk to Reenie. They want to do a calorie intake study. I explained to GI that in her cognitive state Alison cannot eat enough to sustain herself. She needs real nourishment, not just IV fluids and electrolytes etc. I think the last time I saw her eat was during my visit of Jan 14. Alison's scale on her bed says she is 146lb.

Then a new intern came in and asked how Alison's cognitive state was compared to normal. I replied that before her brain injury Alison was cognitively normal (shhh, no one call out my little lie). Since the brain injury, she had recovered to the point where I had spend 2 hours with her joking and talking about life and recovery. Over the last 2-3 months, she had declined and had been treated with anti-psychotic meds and had swallowing difficulties. On a scale of 1 to 10 (with 10 being at Alison's best post the brain injury), today was only a 3. I shared that I did not know what was causing the degradation of cognitive skills (unless it was ongoing decline from the initial July events).

Alison is beginning to get bottom sores.

HAS ANYONE ELSE BEEN THERE TO VISIT? CAN YOU FILL IN ANY IMPORTANT INFO?