U of MD Hospital Update

Alison is currently in UofMD Hospital, the Weinberg building, in the Medical ICU seventh floor, room 710. Before you go, you can call the floor 410-328-6196 to find out if she is still in room 710 and if she is awake. Or call the main hospital 410-328-8667.

Alison is once again all hooked up to monitoring devices, oxygen and leg compression (to avoid clots). They had also shaved her shunt area in order to do an EKG. They have not found anything wrong and the antibiotics and IV are supposedly working as her temperature has dropped. But she was sleeping again when I arrived as she had been calling out all night.

As I was dictating this, Alison opened one eye and looked at me but did not try to speak or show that she recognized me. After a bit, I ask “Hellooooo, how are you?” and then when I saw a faint smile from her, “Is that a smile I am seeing? Am I being funny?” She responded, “I am funny”. I thought it might be aphasia or her perseverating (repeating what I had said). Then, when I told Alison who had been to see her over the last couple of days (Mary Pat and Phil), she turned to me and said "and you know who came to visit me today? Andy Riedy!" She STILL has a sense of humor when she can get her brain connected! Most of the rest of the visit though, she kept asking for help but could not recall a noun to tell me what she needed help with.

I got the nursing staff to swab out Alison’s mouth which was gooped up with phlegm etc. The Doctor and residents came by doing rounds but never stepped into the room or talked with me. The Physician Assistant came and gave me a briefing – thanks Reenie for adding me to Alison’s list. Alison's temperature is returning to normal.

Per the PA, they need to have speech therapy formally confirm Alison’s swallowing difficulties in order for the surgical team to get approved to give Alison a stomach peg. While I was there, Alison later had a visit from the Gastro team. I explained that Alison had 2 bariums that showed silent aspiration, that she had been eating solid foods several months ago but now was limited to honey-thick foods, and that it may not be necessary to do a calorie count as Alison was not able to eat (or drink) enough to keep herself healthy. In addition to speech therapy’s signoff, Allison has to be clear of a fever for at least 48 hours before they can do the stomach peg procedure.

Given the 2 day delay, I asked Gastro (and nursing and the PA) to speed up the speech therapy evaluation to see if Alison can be restarted on food to help with her nutrition NOW. Alison heard this discussion and on queue asked for “Food”.

Alison may be moved today or tomorrow to a normal room. As well, they are restarting all her meds (including blood pressure etc.) Once in a normal room, PT and others would need to sign off that Alison is no longer at risk and that it is appropriate for her to be returned to the rehab facility (post the stomach peg?).

Finally, once back in rehab, can we get Alison’s hair washed?? The EKG goop, on top of the poor shampooing at the rehab unit, mean that Alison has really bad bed head…

Fever and Transport

Alison was transported to UMMC on Sunday with a high fever. She is in ICU. Her fever has subsided. 

Yesterday Mary Pat was there. She said Alison was pale and staring up at the ceiling. Her breaths were shallow. Two male nurses were in the room and ran out and ran back in with a box. Mary Pat asked what was going on. They said they were going to intubate her. Mary Pat informed them of her DNI order and so they stopped. She said everyone gathered around because they thought Alison was going to go into arrest. Miraculously, she pulled through it (like she does) and was alert and knew who Mary Pat was. 

They are not allowed to post DNR/DNI orders because of HIPPA. WOW!!!!!

Mary Pat told Alison that she would be in touch with Reenie. Alison requested that she notify "the Boss".  Philip. :)

They will test to see if she had aspirated causing her temperature to spike. 

More as I hear. 

Sleeping

They say Allison was awake last night with one of her yelling bouts. After I called to day I was driving up from WDC, they gave her a Clonopin and pain meds this morning because she kept saying ow. She is now fast asleep at 11:15 and I cannot wake her. Next time I call, the nurse said she would hold off on the Meds so I have a chance to spend time with Alison, awake....

I asked them to rewash Alison's hair today. Her scalp is very crusty with white residue.

I brought individual served chocolate puddings as well as a fancy chocolate sauce. Whoever comes, please ask for it and let Allison enjoy it with her desserts. I also left a butternut squash soup with sour cream for the nurses to give her later today.

Sent from my iPhone

From Reenie

Jan. 17-20, 2014 From Reenie:

 

Alison was better than she was in December when I saw her last.  She was more alert, more responsive, and moved more (she moved her left leg and arm voluntarily, which was different from December).  She also was trying to shift her body in bed, although not successfully.  She can hold, and drink out of, her own cup.  She can feed herself with a spoon, although she gets tired easily. She is encouraged to sit in her wheelchair—working on holding her back and head up strengthens her muscles.

 

She didn’t yell out, and was not incoherent.  She still has trouble finding her words, but often with repeated questioning I could figure out what she wanted. Her new way of asking for something is to say “help me” and then we work to help her say what it is she wants (have something more to drink, move the pillow, get in her chair, move the curtain so she can see her roommate’s TV, watch more So You Think You Can Dance on my iPad, or help her figure out her words for what she is trying to say or remember…).

 

The staff at the new facility are very attentive, friendly, courteous, and responsive, and Alison seems to be getting good care, judging by what I saw.  The nurses and other staff come and go a lot, and are very sweet with Alison. It is an intimate surrounding and there is a LOT of hustle and bustle, patients and staff constantly moving about, a lot of activity, a lot for Alison to pay attention to –and be stimulated by (even trying to figure out conversations she hears in the hall).

 

She is getting speech and physical therapy (and they will start cognitive therapy soon).  The speech therapist said it is very important for people to be encouraging and upbeat when interacting with Alison, expressing confidence that she CAN do things (even if they are difficult).  I saw it myself.  When I would give her a pep talk, she would muster the energy and the will to do things.  She says she wants to get better but says she is afraid that she won’t.  So the encouragement is enormously helpful, as is focusing on concrete, small steps she can take so she doesn’t get overwhelmed (not surprisingly, she gets overwhelmed easily, thinking of the magnitude of her situation).

 

When Alison wants something she gets impatient (nothing new there!).  With repeated assurances that it will happen/get done, she understands and is willing to wait. It takes patience on our part to interact with Alison—waiting while she searches for the words she is trying to find, doing a version of “20 questions” to figure out what she wants when her words are too few or aren’t quite right, waiting for her to swallow her mouthful of food,…).

 

She was not in pain the whole time I was there.  Only a couple of times she briefly said her back hurt, and by moving her legs to simulate exercises for back pain, it helped.  She never asked for pain medication while I was there.  Once the nurse asked if she wanted her medications and Alison responded yes.  When the nurse brought it in, I asked what it was for, and she said pain.  I was surprised because I didn’t think Alison was in pain—when we asked Alison if she was in pain, she said no, so the nurse took away the medicine.  (Why Alison said yes, and what she thought she was saying yes to, or whether she was just saying yes automatically is not clear – still need to work on clearer communication and figuring out exactly what Alison wants and needs.)

 

Mary Pat and Dawn were there on the last day I was there.  It was a lot of fun mixing thickener with ginger ale (which made a volcano), moving Alison about in her chair, trying to figure out whether Alison wanted the cheese or pate that Andy had brought earlier, having Alison look at the ceiling to lift her head…. As Mary Pat said, together the three of us almost made one nurse. Alison and I were both very sad when I left, Alison cried and cried. I will be skyping and/or face timing with her soon.  (She likes that—so please try it, it’s a good way to keep in touch if you are too far away to visit.)

 

If you want to know about something I haven’t addressed, or haven’t thought to talk about, the best thing is to email me directly: webb@ucla.edu. Thanks for thinking of Alison and, especially, for visiting her!!

Challenges

I again visited Alison today. While she was cognitive and able to speak clearly, she is still very physically limited. She can move her right arm and right leg a bit but only can ocassionally move her left arm and leg in a limited way. I sat with her during PT where they moved her from the wheelchair to sitting on a workout bed. She cannot yet hold herself upright and finds it confusing and scarey. I hope PT will help her re-learn soon how to control her muscles.

Re food, Alison's intake is still limited. She finds the facility food bland and repeatative. Today I took her assorted smooth, honey consistency foods. She liked the liver pate and the aluete herb cheese. The butternut squash soup with sour cream was still a hit. She likes gingerale mixed with the tickening powder. But overall, the volume of intake is still very low.

We are waiting for Reenie's arrival Friday after 5pm. Amy will go out Sat and I will visit Sunday am. Reenie leaves Mon at 5pm so come by for a visit!

I Need More Visitors

Today was my first visit to Alison's new place. It is old and dingy and cramped. Her roommate was outside the door cussing out the nurse for something. Alison's bed is pushed into the corner of a room. She has no tv, no view. Just the curtain that divides the room from her roommates side. When I walked in, Alison was staring at a blank wall. She was happy to see me. She says she is in a lot of pain. The nurse said she was complaining of that all day and that she wasn't due for the next dose of pain meds for another hour. She said that Dawn was there earlier and helped turn Alison and that they had been repositioning her all day. They were contemplating putting Alison in her wheelchair but said she hates it. I lifted her legs up one at a time..in bicycle pose and then straight up at an angle.  We did this several times and held the poses for probably a minute each time. She said that helped her back a lot.  

She has a half dollar size sore on her left leg by the knee. 

We talked about her weight loss and lack of eating. She is bored and disgusted by what they give her. She wants to leave but does not want to go back to "the meanies" at South River.  I told her Philip wants her near him and she could not suppress her joy and smile..although she was really trying to for some reason.  She said Dawn had been there and that she needs more visitors. She asked me what took me so long to visit. 

She was completely (seriously 100%) coherent today. There was no crazy talk, no delusion, no searching for the right words, no yelling. We had several normal conversations. She was very subdued and I think that can be attributed to the pain and she seemed sad. 

My only concern with the facility (from what I saw today) is it's lack of modern equipment. Alison was thirsty and so I got the nurse (or aide) to bring her a drink. She could not get the bed to crank up for Alison to be in an upright position. So she tried lifting her neck with one hand while holding the thickened cranberry in the other. I pulled her up gently by the arms.  Alison took one sip and could not endure the pain of being held up. It was pretty ridiculous and I know Alison was still thirsty. 

Overall good visit. I was really impressed by Alison's demeanor and with-it-ness:)

Yipee

Today was a red letter day. It was the first time I saw a positive path forward in two monthes! When I arrived, Alison was awake and talkative. She was no longer speaking in mumbles or with confused speech. Mary Pat showed up. Allison was given a sponge bath and dressed in Julie’s hand me down clothes. She ate food. Pat and I talked with the doctor, speech therapist (Rachael Gordon ), occupational therapist and PT staff (Laxshmi). We gave them Alison’s medical history: from bad back and neck, to aneurysm, to her heart attack and progress and setbacks since then.

When we first arrived, Alison was depressed and negative. She said she wanted to die. We talked to her about all the progress she could now make and during our visit we showed her in all the ways she was moving forward. She continues to tell us that she is scared and ask for help. We remind her that she needs to work now on getting better. While it will take work, she should not be scared. I hope it sinks in.

We gave the speech therapist the history of Alison swallowing problems, starting when Alison was on the antipsychotic meds. Rachael is going to have a repeat barium test done since the one at Anne Arundel was about a month ago. She wants to see if Alison can progress from just honey thick foods. Allison will first need to strengthen her swallowing muscles.

I took Alison some butternut squash soup with sour cream which she adored. She then ate some of her lunch and drank for drinks. She really missed plain water! We ask the dietitian to provide Alison was salt and pepper and butter with each meal. They are also going to add special protein-enriched drinks / ice cream. They will weigh her weekly to see if she is able to eat enough to maintain her weight. She is currently 151 pounds. When you go to visit, take tasty food that is pureed and thickened so we can encourage her to eat more. I think she would really like a smooth liver pate!

They have Allison in a normal wheelchair. They say she can sit up in it and they want her to regain her core muscles so they want to avoid moving her into a geriatric wheelchair. Today they moved her from the bed to the wheelchair using a sliding board. Alison was not really able to help yet, but it was the first time I have seen her do the move to a chair without being in a sling. Excellent!

I went with Alison when she was taken out of her room to the OT/PT room and given electric stimulation in her left arm. They also had her sit up on the edge of a sitting table for five minutes, with some support. I kept reminding Allison that it was important that she sit up straight and keep her head up (she said good posture) so that she could get stronger.

Earlier this week, Allison was calling out a lot and very loudly. Yesterday, she was seen by the psychologist who changed her meds again. I could not find out what they were changed to. Staff said today Alison was not calling out as loudly and frequently.

From today’s visit, I would say that the staff really is trying to work with Allison to help her improve! I told Alison about Reenie’s upcoming visit and encouraged Alison to do as much as she could in the next week, to show Reenie her progress. I will next go out Tuesday 1/14.

Keep news coming, both good and bad!

From Reenie

... Alison was in the "day room" today--so they are having her "out and about"--at least out of her room.  After some time (I don't know how long), she asked to go back to her bed.  I thought it was great that they are moving her around.

From Christina..Last Sunday

Just wanted to let you know that I went to see Alison tonight. The place is definitely depressing, though I don’t know what her old place looked like. Hospitals tend to be much nicer I’m sure. :) It just smells like nursing home and the room itself was small and shabby. She was on the non-window side of the room. Alison was sleeping when I arrived but I decided to wake her up since I’m leaving in the morning, and while she woke up easily, this was by far the most out of it I’ve seen her. She said she knew who I was but called me someone else that I couldn’t understand, and when I told her I was Christina she nodded and said that name again. She finally was able to say Christina and repeated it, and another phrase that I forget, many times. She said she was sorry a few times and started seeming like she was going to cry at points, but then she would almost doze off. She talked about poisoning and tried to say a few other unintelligible things. I don’t know if she was just totally out of it or if she just couldn’t get the words right. When I told her I loved her the first time she did not reply, though the second time she did and then apologized again. It was the first time she didn’t know my name and that we couldn’t get any conversation in. BUT, a very sweet moment was when I realized the baby was hiccuping I put her hand on my belly and told her to feel for it and she repeated wow quite a few times. I hope she did feel it, or at least thought she did. That was the high point by far. 

Anyway, this visit was definitely the hardest. Saying goodbye was difficult not knowing what’s to come, but it also really made me realize that she is gone and I left missing her old self badly. Hopefully she will start recovering now out of the hospital, but this facility did not seem fully conducive for that. Who knows. I don’t want to be a negative nancy, and I’m sure Reenie will make the best decision for her when she comes. It just hit me hard today I guess. 

Love,
Christina

Mary Pat's Sunday Visit

Alison was exhausted and out of it. She either couldn't recognize Mary Pat or remember her name. She was yelling out. A speech therapist was leaving just as Mary Pat got there. 

This facility is owned by the same group as South River but the building and equipment are old. Alison is in a crank bed. She has a younger (48 I think) roommate who loves her. She holds Alison's hand and consoles her when she's yelling. And she said she doesn't mind Alison 's outbursts !!! I asked MP why her roommate was there. She said she thinks she had a "happy stroke".  She is very cheery and sweet. 

The nutritionist splits her time between both facilities and remembered MP from South River and knows Alison.  (Something about that familiarity brings me some comfort.) She says Alison has lost 11% of her body weight.

I asked MP if she thought that Alison was being as well cared for as can be expected and she said yes. She said there was constant popping in of staff.  

Back to Baltimore

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

Apparently this place is horrible but hopefully only temporary or just a bad first impression. Andy met Alison there upon her arrival. Reenie is coming out January 16 to assess the situation.

Venue Change

Reenie reports that Alison has been placed at a facility in West Baltimore and could be moved as soon as tomorrow.  I hope to go see her at the hospital in the morning before she is transported. Hopefully school will not be delayed or cancelled because of snow, foiling my plan.