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.

Mother's Move But Not to VMRC

Mother has been on the VMRC (Virginia Mennonite Retirement Community) waiting list for many, many years. She had lived in Crestwood, their assisted living section for a month but her back pain got worse and she ended up in the hospital.......turned out her back was broken - no wonder she wasn't making progress in therapy! When it came time to release her from the hospital, we assumed she'd move to the Skilled Nursing unit at VMRC, but, they wouldn't accept her! They said she hadn't shown progress or effort in her physical therapy so she didn't qualify for their skilled section. They didn't have a bed available in their regular nursing home so.........

This might turn out to be one of those lemons that we'll turn into lemonade. We've always been so keen on VMRC (and it is a wonderful place) that we've never looked at other possibilities. We're finding out that other places aren't nearly as expensive. After 6 weeks and a day in the hospital, Mother was moved to Harrisonburg Health and Rehab Center.

Update on Mom & Levi May Hits JMU!

Mother's doing better. She's quite lucid with only small lapses into her imagination and her speech is clearer. The plan was to transfer her to the skilled nursing unit of VMRC (Virginia Mennonite Retirement Community) today but her salt level dropped last evening. So, it might be tomorrow ....or when the doctor feels she's ready. Tomorrow makes 6 weeks in the hospital.

My sister-in-law, Maribeth, is here from Texas - helped move Levi Walker May into his freshman dorm at J.M.U. (my old stomping grounds) yesterday. She's going to spend 2 days with Mother - to try to motivate her to exercise more.......and to give me a break. I've been at this daily visit routine since March.

p.s. I thought it would be nice to have my nephew nearby but have been advised that the only drawing card will be a home-cooked meal!

Mother in Hospital for 35 Days

Mother has been in the hospital for 35 days. It seems that every time they get one problem taken care of, another one appears. The Kaifoplasty worked on her back and she seems to have no pain there.

3:00 p.m.
Today was a really long one for me because I went to the hospital early, determined to get some lunch in her and to try to be sure the physical therapists came. It started out well because she took all her pills without any trouble.

The physical therapist and her assistant came. I was hoping for a bit of progress because she had called me this morning and said she wanted to walk down the hallway today. They moved her legs and feet in bed. Then they sat her up on the edge of the bed. She went into a frenzied panic mode, hyperventilated and said she was falling. Even with the three of us, we couldn't get her to calm down and after about a minute with her begging, they helped her lie back down.

Ed brought her a cheeseburger (the doctor said she can eat anything she wants to) and her eyes lighted up. She took a tiny bite. Then her lunch tray came and she took 2 sips of coffee, after which she started retching. Nothing came up but clear "spit". The only thing I could get in her was 3 bites of jello.

I feared that things might change without all the family around all day long. I'm not sure what to think at this point but I have to remind myself that each day is different and maybe tomorrow will be better. I don't know how in the world the nurses, assistants, specialists, and doctors can do their demanding and often "icky" jobs. God bless them each and every one!

9:30 p.m.

Faith returned my call to tell me about her time with Mother this evening. When she got there, Mother was paranoid and said everyone was laughing at her. She said there was a little boy there who was laughing at her. She said Ed was supposed to come get her but he hadn't shown up. Faith tried to get the subject changed.

Dr. Roussel came in just about the time her supper did. She said he was really good with her and said he hoped that tomorrow she'd try a little more with the therapists tomorrow, even if it hurt a little, because he doesn't want to keep her in there forever. Her supper was steak (that's another story) and he said, "When your kids were little didn't you tell them to eat all their meat? Well, that's what I want you to do."

I think my conversation with him last evening on the phone might have gotten through. She had told me that Dr. Roussel was mad at her and she knows she didn't lose weight and exercise like he told her all those years. But that was in the past and she needed him to encourage her, not scold her. I took a chance and told it as a quote from Mother.

The STEAK Story

Mother had said she was getting steak on Monday. I saw the man (His name is Ed and he's a ray of sunshine) who brings the meals in the hallway and asked if she was getting steak. He said no......then said he had seen the chef making steak for some conference and he'd try to see if he could get one. Well, I guess he did!! Faith was able to get every bite of that steak in her!!!

Ah, I'm going to sleep better knowing that her day got better. And thank God for Faith - she's worth every penny!

Better But Some Strange Dreams

Ed and I went to see Mother after church and I fed her as much of her lunch as I could get in - I'm pushing the protein as the doctor said. She ate most of an egg salad sandwich. She's trying to feed herself but is shaking so badly that she spills. She knows she's shaking - told Faith (the young, wonderful caregiver who we hired when Mother was still at home and has visited her several times) yesterday. Today her whole body is shaking, not just her hands. Everyone says that when her electrolytes get balanced that should stop. I'm wondering why it's taking so long to get them balanced??

She's definitely speaking much more clearly. She is mostly lucid but sometimes imagines things. She's very hung up today telling us how the court house in Dobson (her hometown in North Carolina) is being remodeled into a "domicile" by some doctors and how nice it looks. She said the upstairs windows have these huge long drapes of lace and how beautiful they are and the ceilings are just lovely. When Ed left the room she said that was good because he could look around and see how beautiful the decor was.

Anita and Phil Had to Go Home

We hear stories about people who were as bad off as Mother who regained strength and got better. This is like a roller coaster - every day, as soon as one problem gets successfully treated, it seems another one shows up. Both her arms and feet/legs have blown IV's so, at Phil's gentle insistence, they're putting in a picc line today. Then they can get her potassium and calcium balanced.

I took Anita to the train station for her return to Ohio and our cousin, Jim Bowman, took Maribeth and Phil to Dulles for their return to Texas. I'm a bit concerned that there might be a backslide because Mother had family hovering over her from early morning till late at night for 11 days.

"Turn Around" Day

Friday, August 1, 2008 was an indescribable day. None of us slept Thursday night. Phil and Maribeth (his wife) went in at 5:00 a.m. and sat for a while…..Mother was sleeping peacefully. Then they left for him to get a haircut. Meanwhile, Anita arrived about 9:00 a.m. and Mother opened her eyes and asked for Phil. He was still in town (thank heavens for cell phones) and went back to the hospital.

Mother opened her eyes and asked him how he was. He said, “Not so good.” She asked what hurt and he told her his heart hurt. She asked why and he said, “Because you’ve chosen not to live when it doesn’t have to be this way……”

There was a pause and she said, “I’ve changed my mind.”

Maribeth said she wouldn’t have believed it if she hadn’t been there!!!!!!!! They asked if she was willing to take her meds, eat, drink and do her physical therapy. She agreed and drank some ginger ale right away. She was lucid and the change was amazing.

We “pushed” liquids and food (Ensure and pudding) all day. She actually drank 2/3 of a bottle of Ensure – more than she drank all week put together. We got about 8 bites of cream soup in her and more ginger ale.

It’s almost like the dead has risen……..I’m still in shock!!!

Right now I'm afraid to tell people because I don't want to jinx anything. Phil plans to stay another week and that'll make a difference for Mother. Anita and Phil are beat from just a couple of days - gives them a clue what I've been trying to do since April when this all started. Then again, yesterday was the day she had chosen to die and that wiped us all out.

It’s a MIRACLE …what else could it be? Prayer works!!!!!

A SAD, SAD Day

Thursday, July 31, 2008 was a very hard day for my sister, my brother, and me. Mother has been in the hospital for 3 weeks and this week had refused her meds, food, and liquids. Anita (from Ohio), Phil (from Texas), and I spend a lot of time by her bed and she was lucid some of the time. We all had a chance to talk to her and listen to her wise and loving words, although it was hard to understand her. She made it clear that she was ready to go and that she wanted to go” today”! She did not seem to be in pain but she was miserable and suffering. Anita asked her if she was afraid and she said she wasn’t. It really felt like she would go at any minute.

We met as a family and decided to stop all the meds and IV’s, except for her pain patch. The plan was to move her to the skilled nursing section of VMRC (Virginia Mennonite Retirement Community) the next morning and Hospice would be involved with her care there.

BUT……the puzzling and frustrating thing for her doctor was that her vitals were all good, her back Kyphoplasty worked and her back pain is gone, her kidneys are fine, etc. so physically, there was no reason for her to die. He attributed it to a deep depression and tried his best to encourage and motivate her, telling her that if she would try, she could be walking out of there one of these days. She didn’t respond. (Yes, he had put her on an anti-depressant.)

Hospital Stay for Mother

Mother was in Assisted Living for about a month. A week ago Saturday, she was not able to get up, even with the help of two assistants. She went to the Emergency Room, was admitted and she's been there 9 days.

After more MRIs, CAT scans, etc. they found she had a lumbar compression fracture on L-4 (yes, that means she has a broken back). There was no fall but sometimes when older bones are so fragile, even a turn or twist can cause a break.

Friday morning they did a procedure called a Kyphoplasty, where they go into the broken vertebrae and inflate a balloon to press the fracture back in place. Then they fill that space with a special cement. This has helped many people get relief from pain. Click the words for more info: 1.Kyphoplasty definition 2. Kyphoplasty is.. 3. Kyphoplasty video

She slept the whole day Friday and looked peaceful. Yesterday, she was confused but was upset because she knew she was confused. That's a result of the pain meds building up in her system and they're already cutting back on those. It appears they'll leave the pain patch but will be using Tylenol for additional pain if that will do the job.

I feel relieved that they DID something. I was afraid they'd go the "brace/therapy" routine again. Things are set up for her to return to the retirement center to their Skilled Nursing section for a while. We don't yet know when that will be.

Assisted Living for Mother

I forgot to mention that Mother is in an assisted living facility in VMRC (Virginia Mennonite Retirement Community). It's a wonderful place and the therapists come right to her room and take her to therapy.

She's had a lot of pain and thanks to Phil, my brother who visited last week from Texas, she has better pain meds that are helping some. He also got her into an orthopedic doctor for evaluation. She has so many things wrong in her lower back that even I could see it on the MRI. They're going to try an epidural steroid injection on July 9th, in hopes that she'll get some relief. We'll be back from bringing the RV home before that.

Mother's goal is to get stronger so that she can return to her beautiful view and her "stuff" on the farm near Singers Glen. We all hope this will happen.

Mom's Diagnosis

Mother saw the doctor today and it was a relief to learn that they found out what's wrong. She has two problems.

1. Polymyalgia rheumatica (meaning “pain in many muscles” in Greek), or PMR, is an inflammatory condition of the muscles, which causes pain or stiffness, usually in the neck, shoulders, and hips. She will be treated with cortizone (pill form Prednisone) and will probably need to take it for a year.

2. Bulging disks in her lower back. The doctor has prescribed specific physical therapy that will, hopefully, relieve the back pain. If not, surgery might be a possibility in the future.

I'll be on the phone tomorrow trying to set up caregivers to come in during the day and to find a place where this particular therapy is done.....hopefully on this side of town.

The RV shelter is coming along. It's turned out that Ed is building it himself and Mike Stroop, a friend from church, has helped quite a bit. One of these days, we'll be flying to Florida to get our dear motorhome and tow car.

Flat-out Like a Lizard Drinking Caring for Mom

.......that's what they say in Australia when someone's super busy! In this case, I'm referring me being busy and to Mother (age 82) being flat-out.

(I'm prejudiced because she's MY mom but, isn't she pretty?)

Mother had gotten along pretty well after her sprained hip ordeal in late March. Her doctor sent home health therapists who really helped her. She had even driven herself to the Wellness Center for her water aerobics class.

But, last Saturday this pain started in her lower back. Her doctor sent her for bloodwork and an MRI. He says it's not sciatica. He mentioned a pinched nerve but I am wondering if it could be a hernitated disc......this is her 9th day in pain. If she stays still, flat in bed, she feels OK but the slighted movement brings on such pain and those type spasms that "grab" you and are so strong they take your breath away.

We'll call the doctor first thing tomorrow and hopefully the MRI will show something! She can't keep on this way.

Anyway, one of the purposes of this post is to explain why I've gotten behind on my email responses. Ed's making some progress on the RV shelter.....got siding on the large wall and a small section of roof installed yesterday. I'm busy with Mother's care and sneaking out to garden as much as possible!

More later.....