Some Progress in Therapy

Mother was pretty confused today trying to find out how to get to the Wellness Center and when to go. I patiently explained to her that she was in HHRC and the therapists will come for her. She said in her OP session she had to put clothespins on a rod and it felt like there was creme? on them so she only did 3. Her confusion is interesting because the first part of a sentence will be perfectly lucid but the second part is s-t-r-a-n-g-

I went and talked to Pam, her other therapist who said she did very well and she was pleased that Mom leaned forward better than she ever has. That's the first step towards getting up. Also, she observes that Mother is able to tolerate being in a chair much longer at a time AND that she hasn't mentioned pain today!

When Brother Philip was here, he sweet-talked the right people and finally Mother got a man therapist named Phil. Phil was taking her to therapy as we were leaving. He's very dedicated......Philip and Maribeth sent him a thank you note and a gift card for Outback. He REALLY appreciated the card but they're absolutely not allowed to accept anything like that. Hey, wanna go to Outback tonight? I'm buying!

This is sounding like a sob story - Meanwhile, I had my flu shot on Monday and it was the very first time that my arm didn't get sore. On Wednesday I woke up with a knot the size of a pea behind my ear and pain down my neck. By Thursday, both ears and down the sides of my neck were hurting. I called my doctor and he thinks it's a reaction to my flu shot and will take several days to go away. The knot is smaller and the pain of sort of better - my ears feel stopped up, too.

As Roseanne Roseannadanna used to say, "If it ain't one thing, it's another!"

Happy Halloween!

She's Back in Town

Mother was transferred by stretcher in an ambulance yesterday from UVA Medical Center to Harrisonburg Health and Rehab. I'm pleased that her same room was available - especially since it took 2 weeks of annoyance with Verizon to get her phone set up.

Phil, Maribeth, and Levi are visiting her this week. Mother OK yesterday afternoon and really perked up when Levi came in. Phil still would like to take Mother to Texas for the winter so this will be a chance for him to see the equipment they use and to work with her therapists. The timing for Phil's visit worked out well for them to be with Mother here, instead of in Charlottesville. They are here for Uncle Bob's funeral today and we get to spend some time with them.

I'm taking a much-needed break and might even find time to plant the daffodil bulbs I bought 2 weeks ago.

Maybe Moving Tomorrow & Uncle Bob

It appears that Mother will be transferred back to Harrisonburg Health and Rehab in Harrisonburg tomorrow. I do hope it's not too soon! Ed and I came home today and were planning to take a break while Phil and Maribeth were here this week to visit Mother. This will work out well because we'll have a chance to be with them after all.

My Uncle Bob May was diagnosed with cancer less than 2 weeks ago. He had decided to have radiation treatments and was to start this coming week. Thursday, he was put back into the hospital and died on Friday night. The visitation will be Monday evening and the funeral Tuesday morning.

It will be strange because for my whole life, he's just always been there. He loved to take pictures of people and always got duplicates to give to them. He was amazing with numbers - could add a column of numbers faster than one could put them into a calculator. Who is going to keep us updated on exactly how much rain or snow we got? His testimony at church several months ago was very touching to the congregation and gives me comfort because we KNOW where he is right now.

I'm still trying to digest this news. Mother is very upset that she won't be able to go to the funeral but there are some circumstances where things, such as major back surgery, prevent us from doing all we'd prefer to do

Day by Day

There's not a lot to report these days. Mother is still having the hip pain and will be going to Hess Orthopedic on Monday. Hopefully, they'll consider a steroid shot to reduce inflammation or will find something specific to treat. She goes to Charlottesville for a follow-up visit with her surgeon on November 11th. The rehab center arranges all these trips with a transport service as she still goes on a gurney.

Ed has requested that I not discuss his health on this blog, so if you want information you can ask him. Things are looking OK for now. My fibromyalgia is still affecting me but if I keep the stress level down and take my 10 daily meds, I can function.

We're planning to leave for Florida right after Thanksgiving. December was the coldest month last year and it's already cool now (high of 51º for today with frost most nights). So, maybe I can return to Angelil Adventures "IN THEIR RV!" before too long.

A Better Day

Mother was much better today and had very little confusion. She was moved out of the step-down wing to a regular room this afternoon. That, in itself, is a good sign. Today she realized that her hip isn't hurting, which indicates they released the pressure on her spinal cord.

Phil and Maribeth flew in from Texas today for the JMU Parents' Weekend with Levi and will be coming over to Charlottesville for several days. It's possible that she'll return to Harrisonburg Health and Rehab Center next week. It would be nice if she would be transferred while they're here - IF she's ready. I don't want to rush anything.

Ed and I hate to miss being with Phil and Maribeth but I really need a rest so we will go home for a few days.

Rough Day

I'm sorry to report that Mother's not having a good day today. When I got there this morning, she was in a chair asleep and her hands were swollen and dark, the color of a bruise. This afternoon they had her back in bed with her arms up on pillows and the coloring was almost gone, although the swelling was still there.

She's not very responsive and can barely open her eyes. Her sugar level and potassium are both low today. They're having several specialists to assess what might be going on and they're coordinating adjustments in her meds. The nurse said she'll likely be on this "step-down" wing several more days.

This afternoon she said she didn't hurt - that's a good thing. She knew Ed and asked how he was. Besides that, I couldn't understand the few other statements she made. She drifted off and seemed to be sleeping peacefully when we left.

Sometimes humor helps - yesterday out of the blue she asked, "Am I tied to a pole?"

Frances May
6th Floor
UVa Health System
1215 Lee Street
Charlottesville, VA 22908

Mother is in a "step-down" room, which gives more attention than a regular room but less than an ICU wing. She is talking, though somewhat confused. Her incision goes from the tailbone up to her waistline and is draining as it should be.

One of my classmates from grade 1 through high school lives near Charlottesville and came over for lunch today. Linda Morris Powell and I had such fun talking and catching up on everything. It's nice to have Ed here as he monitors me - I've had a lot of fibro pain today so he insisted I not go back to see Mother this evening. I've had a nap and plan to retire for the night soon.

Resting

Mother is coming along, with all her vitals as they should be. They're moving her from ICU into a "step-down" room this afternoon. In a few days, she'll go into a regular room again. The therapists have already been there and had her to sit on the edge of the bed. After them getting her up with some discomfort, she was able to sit upright on her own.

She opened her eyes when we talked to her and had a short conversation. She had told the nurse she didn't have pain and, just as I expected, when I asked her if she hurt, she said she did. Ed explained that as a Southern lady, she wouldn't want to cause the nurse extra work so she denied pain. The nurse immediately got something and added it to her IV. She nodded off in about 5 minutes.

I'm now going to have a long nap.......I am really beat and I admit it (for a change).

Thank you to all our family and friends for your prayers and support.

Prayers Helped with Surgery

4:30 p.m.

The surgeon just called and said the surgery went well and they found just what they had expected. He said her osteoporosis has made her bones very soft so they are making a back brace to add stability for now. I forgot to ask him how many vertebrae were included in the fusion/steel rods but will find out later. I am thankful that they're putting her in ICU for now. Being here at the University of Virginia Medical Center is also reassuring to me because of their experience and the resources at hand. Thank you for your prayers.

Pastor Bob arrived before Mother went down to the prep area and we both went with her. I enjoyed talking to him for over an hour until Ed arrived, then the three of us had a pleasant lunch out on the patio.

Ahhhh, I will be able to sleep tonight - especially since my "Angel Man" is here. He needed to see his doctor this morning regarding his CAT scan last week. He is going to have a PET scan this week - I'm trying not to worry.....

Hunter and Mary Margaret Hollar, my cousins, helped me out this weekend. Besides letting me use their condo, they came over, cooked for me, visited Mother, and gave me rides so I could stay after dark (Their condo is a 10 minute walk away), but most of all, they just "took care of me." God bless them both!

8:00 a.m.
Mother will go down to surgery prep about 9:30. The surgery will be about 10:30 and will last about 5 hours.

Mom moving to private room

Mother is being moved to a private room so her phone number is different. She might be in critical care after surgery so that'll be another room change. (We won't find out the surgery time till tonight.)

Starting today, please call the main number and ask for her by name. 434-982-1100

She's really getting cold feet - this is a VERY long day. Too bad it didn't happen on Friday. Oh, well, it'll all work out in God's plan. Bless all of you!

Surgery postponed

Mother's surgery is postponed until Monday. There is going to be some big surgery which will pull all the OR staff. I wonder if they're doing a transplant or a separation Siamese twins! ; )

The hospital has sitters so we're trying to find one to help her through the night. She is really having a tough time emotionally, even with the anti-anxiety medicine. Plus, she's having some confusion.

I can't get on the internet from my computer so have a few minutes on this one in the Visitor's Lounge. Since it's Saturday the techie who helped us yesterday isn't here here to help......that's terrible - The Computer Team and we can't fix it. When Ed comes back over, he'll probably figure it out.

Mother will be having back surgery tomorrow here at the University of Virginia Medical Center. I was puzzled that it was postponed from Thursday till Saturday because she wanted to think about it. That's not quite right. There are many things that have to be checked out - such as the medical team who decides if her heart is strong enough.

If she gets no treatment, she'll just get worse and worse and worse and the lower back vertebrae could all collapse.

The surgeon met with Ed and me to show us the MRIs and explain what they're going to do. He also called Phil and Phil talked to Mother several minutes because she had said earlier she didn't want the surgery. She's very afraid of the pain after surgery and they've reassured her that they'll be using all sorts of things to fight the pain. Her RN today is a bit older and has been really wonderful with reassuring her.

I was impressed with Mother's smart question: "Will I be able to bend to pick up things from the floor?" They said she would. Finally, she agreed.

In layman's terms: There is a small fracture that shows a little piece of bone that's sort of hanging in the spinal canal. One of the disks has burst and that "jello" type liquid is also leaking into the spinal canal. They will be clearing out the "debris" and putting in screws with 2 rods that will hold the vertabrae in place. They won't know how many vertebrae will be included until they get in there.

The doctor explained to Ed and me that this is no small surgery. The surgery itself will last about 5 hours. She might be in neo-intensive care for a day or so if needed. And she might be here about a week.

They have 4 main goals:
1. To decompress the spinal canal.
2. Push the fracture back or remove it.
3. Fuse as many vertabrae as needed with 2 rods
4. Preserve the function.

Mother's scared and I'm not looking forward to it either - I just hope they deal with the pain as well as they did after Ed's heart surgery. I feel reassured about being here at U.Va. Medical Center with all their resources. Her surgeon is Dr. Mohamad Khled and her nurse said he's the best. I thought he would look foreign but he doesn't. I've googled but haven't found much: http://www.healthsystem.virginia.edu/internet/searchweb/home.cfm?s=+Mohamad+Khaled&st=people&Submit=Search+People

Please send a few extra prayers for her!

p.s. There was not an infection in the spinal canal.

The Mays' Medical Maladies

Mother (83) has continued to struggle with pain and inability to move her left leg. The doctor at the rehab center sent her for an MRI yesterday. That showed several things wrong in her lower back, the most important to address first being a suspected infection. She was sent to our local hospital but there are only 2 specialists - one was out of town and the other couldn't come to the ER. So, she was sent by ground ambulance to the University of Virginia Medical Center Friday evening.

My fibromyalgia kicked in and I feel exhausted so Ed and I decided there was nothing we could do last night and I'd come home, rest, get my meds, etc. to go in the morning.

The doctor called about 4 a.m. There are several problems and they feel surgery is necessary. I had him call my brother, Phil, who is a nurse anesthetist in Texas. As I suggested, they have Phil talk to Mother as she is hesitant, which he did.

Meanwhile, my Uncle Bob (87) was admitted to the hospital last Friday with what they thought was a major stroke. That has turned out to be cancer with tumors on the brain and lungs. They are testing other areas to see if it has spread and to pinpoint what kind of cancer it is. The family met with the doctors yesterday and Uncle Bob wants to do the radiation treatments which may give him 6 months instead of 2. Meanwhile, Aunt Ginny has Alzheimer's and needs to have someone with her. They live just over the hill from me and the one time I might have been able to help is the time Mother is also down.

Meanwhile, yesterday my nephew, Levi, who's a freshman at JMU called. He'd been to the infirmary with a sore throat and pain and had gotten a prescription. I had just returned from Mother's MRI to the rehab center so was able to go get him and go to a pharmacy. He goes back to the infirmary tomorrow and if he's not better, they'll test him for mono.

Ed had bloodwork yesterday and a CAT scan today. The shingles aren't gone and his latest X-ray shows something still on his lung from the pneumonia. He still feels lethargic and had said that tomorrow he was going to stay in bed all day. Looks like he might be going to Charlottesville instead - IF he feels he can handle it.

Sounds like the Mays and Angelils are falling apart up here, huh? I can't write a lot now but will update this blog if possible.

Please pray for us, especially Mother.

Mother meets her new doctor....

As you know, Mother left the hospital after 6 weeks and was transferred to a skilled nursing/rehab section of Harrisonburg Health and Rehab Center (HHRC) on Saturday. She was so lucid on the moving day, I could hardly believe it. Unfortunately, she has once again become confused. One sentence makes sense and the next several don't. Keeping our sense of humor helps us cope.

The social worker had asked her some questions this morning and Mom seemed to be answering so appropriately - UNTIL she started having a conversation with someone who wasn't there. The social worker rechecked some of the info with me. Mother knew she had 3 children and said their names were Mary, Anita, and April. Poor Phil, thinks he's been disowned! Don't know how April got promoted from grand-daughter to daughter??

I was pleased that I happened to be standing at the nurses' desk when the house doctor, Dr. Shenk, was just starting to look at her chart. We talked and discussed realistic goals. I said it would make life easier if she would be able to sit up, stand up, and transfer to a commode chair or a wheelchair. Then we could take her outside and she could go to a dining room for meals. He had several new patients to see but since I was there he went to Mother first and I was impressed that he really took his time.

He asked her, as many assessments go, where she was now. She said, "I'm supposed to be in heaven!!" He told her that her mansion wasn't quite ready yet and while she's waiting for that to be ready, he'd like for her to be comfortable. He mentioned therapy and she blurted, "I don't want to have to be rude to you but I DON'T want to hear about therapy!!" He also checked her heart, etc. and told her it wasn't like the hospital where the doctor comes every day so he wouldn't be bugging her that often.

After he left, Mother told me to give her some of that candy down on the floor. I said there was no candy there and she said, "Well, check under the edge of these covers. There's lots of candy there." I asked if she wanted a snack and went to find one for her. The doctor and I agreed that, even though she has Type 2 diabetes, diverticulitus, and reflux, if she wanted something sweet, she should have it now and then. I found a nice, fresh donut but she only took one bite.

She asked me several times if we were dead. She also said, "I thought Jesus would be taking over all this business!"

By then her roommate had returned from therapy for her replaced knee. She said she and Mother were having a hard time because neither one of them could hear. Also, Mother mumbles so softly I can barely hear her. A gal, who spoke fairly loud, came to visit the roommate and they said a few things to her. After that, Mother seemed to think she was part of their conversation and was just chatting right along. She was so soft that neither the visitor nor roommate noticed she was talking. I told her I was leaving but she was so busy talking that she barely noticed.

I stuck my head back in and told the roommate I was sorry Mother had waked her at 3:00 a.m. She asked if I were Mary and said that was mostly who she was calling for. I think it might have been for me AND for Aunt Mary. The nurse said she'd been awake since 3:00 a.m. until her nap after lunch. I hope she sleeps better tonight.

I told the social worker and doctor that she responds better to a male therapist. They have a big therapist named Gary and I do hope he'll have her. After lunch, when the therapist came to work with her today, she was sleeping so soundly that they decided not to disturb her. I hope Gary will start with her tomorrow.

Mother's vitals are all so good that she possibly could be with us for some time yet. I did think the "heaven" and "Jesus" statements were cute and it's good that she's focused on something positive as she thinks about and wishes for death. I've got to remember that part about her mansion not being ready yet......it will be a good response when she gets on this subject.

At times like this, I treasure special memories like "Houston, we have NO problem!" and "Pelican Place" .

Mother's Move to Rehab

My brother, Phil, replied to my description of her move with, "Thanks for your humorous description of the day's extravaganza. I'm still laughing." So, instead of a summary, I'll just share it as it happened:

The nurses had Mother all packed up when I arrived at 1:15 yesterday (Saturday, August 23, 2008). Her nurse came and put in a new catheter. She had me go to the gift shop for chocolates and I got 2 boxes (12 oz) each - the biggest they had. She took a look and said she had in mind a 3 lb box of Whitman's. They had 6 oz. of Whitman's for more than the Russell Stover I had gotten. So, she had me go back down and get 2 more boxes of Russell Stover's.

The ambulance came and it was interesting getting her onto the stretcher - which was about 12" wide with a "groove" for the patient. They took the sheets and all but when they got in the middle of the transfer, they discovered the sheets were VERY stretchy! We left at 2:40. They also let her wear her lovely hospital gown - wasn't that kind?

Her room is larger than the hospital one with a big window and trees outside. There's paperwork ready by the other bed, so she'll be getting a roommate. Her bed is an air bed almost a 3/4 one - nice and wide. The remote to move the head up, etc. is small and the arrows are shiny against a dull background. I could barely see it and Mother really didn't catch on yet. She fidgeted and tossed and turned. I reset all sorts of settings from firm to soft but she just couldn't get in a comfortable position. Finally, I figured out that she was feeling achy so they gave her Tylenol.

A man physical therapist came to evaluate her.....he has 30 years experience. He got her to sit up smoothly - she wanted to lie back down but he kept distracting her so she was up about 10 minutes. He tried to get her to stand but after a couple of times said he believed they'd need to build up to that. He told her he'd been reading her records and saw where she'd refused treatment or to try. He said that they didn't work that way here because their job was to get her standing and walking again. Wouldn't you know - he fills in on weekends and only just now and then! So, she won't see him again. Darn!!

Then an occupational therapist came. She was teeny except for her HUGE belly and yesterday was her due date - I feared she was going into labor at any moment. She said if it doesn't come soon, they'd induce labor on Thursday. She - or whomever - will be helping her learn to dress herself, get to the toilet, etc. She suggested I bring some clothes and housecoats for her to wear during therapy. She just had Mother raise her arms, etc.

Faith came to visit! (Faith is the young, industrious, Mennonite caregiver we had hired when Mother was still at home. Mother just loved her!) She had gone to the hospital and heard Mother had moved. She visited for about 15 minutes. I told her I'd be in touch as I thought it'd be good to have her come sometimes. She said she was finishing with one patient and only going 1 day instead of 3 to another so she'd have a lot of open time - maybe could come at lunch time some days. It appears Mother will be busy with therapy during the day - I hope. I don't think Faith needs to come to feed her now but I think a visit in the late afternoons and evenings, that tend to seem so long, would be helpful.....we'll play it by ear.

Then it was like we were all dressed up but with no place to go. There she was in a room all alone - except for me - with no one coming around. She rang for the nurse twice and it seemed forever to her, but they came in under 15 minutes both times. I don't think Saturday was a good transfer day because they only have 4 nurses/aids on duty for the whole wing.

Mother was totally clear all day except for one small sentence about "the little boy". When things got quiet and she was fidgeting, she started getting upset. She cried some and said she was acting like a baby and that was shameful. She said she just wanted to go on (to heaven).......why couldn't she? I told her that God doesn't give us that choice.......that we just have to go with His plan.

Ed came then and made some conversation. He's always good with her because he talks so loud. He tried to put her AC cooler and it appears it's not even working. The aid said if it was a problem, they'd page a maintenance man but otherwise they'd get it fixed on Monday. I thought it was pleasant - a nice change from the freezing hospital room.

I had mentioned to the aid that Mom has divertic and diabetes so I hope the dietician was informed. The aid came to the door with a tray and motioned for me to come out. There was corn and a stuffed pepper. She said she didn't think this was right for Mother, was it? So, she went back and got a chicken salad sandwich (freshly made) and the ever-famous mashed potatoes for her. I also forgot to mention the reflux. Those 3 things do make food choice a challenge. We left her with a sandwich in hand.

I was waiting and waiting for the admitting gal so as Ed and I were leaving, we asked to see her. They had said they had 6 people admitted that afternoon. She had people in her office but said everything was done - she was waiting for Mother's pain patches to be delivered. I was delighted to hear that so went back and told Mother before we left. She will be having the house doctor - Dr. J. Shenk. I think it'll be good to have a change.