Monday, January 31, 2011

January 31, 2011

I spent last night with Jim at the "home." I pretended that we were on a trip and we could only find a hotel room with 2 single beds.

I set my alarm at 4 AM so I could supervise his bowel program. It went well and as a result he had a much better day today. He got to have PT and OT today. He worked hard again. He loves to talk to all the therapists. I have to tell him to be quiet and do his exercises. Otherwise the therapists just listen to his jokes and he doesn't get the treatment that he needs.

His right arm, hand and leg are doing much better than their left counterparts. I worry because he still doesn't feel his bladder or colon. But then it has only been 2 months since his accident.

Tomorrow I have to work all day. I'm not planning on visiting him tomorrow. It just takes too long to get to Manor Care during rush hour. I would no sooner get there than it would be time to go home. I need some "at home time."

Sunday, January 30, 2011

January 30, 2011 Mom

Mom is having a very difficult time also. I am rarely home these days. I have someone come over to watch her every day. She gets them to do every little thing for her so she is moving around less and less. She is also getting very confused.

I came home today at around 1:30 PM to pick up more clothes. Mom was still in her pj's. She got up and went down the hall to the bathroom. When she came back into the family room she asked Lupita and me how we slept. Then she wanted breakfast. She didn't believe us that it was 2:00 in the afternoon.

Mom has been having more night terrors lately. She makes blood curdling screams at night sometimes. It's no wonder that I was scared of the dark when I was little. She really scared Jim the first time that he heard her. I told him that she had been doing that ever since I can remember. Now she has added lots of talking along with the screams.

One morning I was still at home and she pressed her lifeline button. I checked on her and she said she was scared and wanted something to drink. I told her that lifeline would send an ambulance for her. She didn't want an ambulance. She just wanted someone to come take care of her.

Jim's accident has affected all of us. My son, Andy told me to be positive. I'm positive that "life can really suck sometimes." That doesn't mean that I've given up on life. It just means that it is extremely hard on us all right now. This is the time when family members need support, not criticism.

January 30, 2011

Poor Jim is not feeling well today. He has an infection at his catheter site. Mabel, his nurse yesterday, said she was going to call his doctor. But I don't think that she ever did it. Today the nurse, Ushe, called the doctor. They'll do a culture on the pus and a urinalysis tonight. I think he should start antibiotics today but they won't give it to him until the test comes back tomorrow.

Last night the nurse, Rosa, did a poor job with his bowel program. So, he has problems today. I tried to help with the bowel program but I fell asleep. Tonight I'm bringing an alarm clock so I will get up to do it with the nurse. Maybe he will have a better nurse tonight.

At night there is only one nurse and 2 assistants for 23 patients. That's just not enough! I guess I'll just have to spend every weekend with him or hire someone. On Wednesday, Thursday and Friday the nurses did a good job.

Yesterday he was sitting in the wheelchair for a couple of hours. He just doesn't have enough natural cushion (butt fat) to sit upright for long. It's hard to do exercises with him when he is in bed. When he sits up, I put a tray on his lap so he practice with a pegboard, clay, etc.

Again, when Jim feels bad, I feel horrible. He needs so much assistance. I get physically exhausted and it's very difficult emotionally, also. All I can do is to keep on trying and hope life will get easier again some day.

Friday, January 28, 2011

January 28, 2011

Jim is now safely ensconced in his new location - Manor Care Sharpview, Room 151, 7505 Bellerive, Houston, TX 77036 (713) 774-9611.

There has been a nursing facility in that location since before I moved to Houston in 1973. My first apartment was at the corner of Fondren & Bellerive - and it is still there, too. I would have never dreamed that my husband would need to go there.

It is a nice enough facility, even though it's in an old building. The common areas are nice. Jim's room has chipped paint, old fixtures, etc. but he has a window that looks out into a courtyard. Yesterday we enjoyed looking out at lots of birds and neighborhood cats.

I chose Sharpview for Jim because I liked the physical therapist, Kevin and because I was promised a private room. When we got there on 1/26/2011, the head of nursing, Tina was insisting that Jim stay in a room across from the nurses' station. He would have to share the room with an old guy. She thought it would be safer for him to be close to the nurses. I insisted on the private room and the admissions director, Katie got us one. I think she originally planned on giving him a nicer room but it was further away from the nurses' station. Room 151 is at the end of the hall so it's quiet. That's a nice change from TIRR.

I spent the first night with him. The nursing staff was very attentive and came in to turn him every 2 hours. He has a much nicer bed there - an air bed. It's big and very comfortable. He hasn't had as many muscle spasms since getting a better bed. I tried to get him an air bed at TIRR but the doctor said no. At 5 AM two techs came in to do his bowel program. I hope last night went as well also.

He had physical and occupational therapy yesterday. Kevin put him in a manual chair so he could do a bicycle contraption. He played with clay and a pegboard with the OT, Holly. By 3 PM he got very sore sitting in the chair and I had to get help to put him into bed. He wanted to stay up but the pain was too bad.

He got really cold when he went to bed. I put 5 blankets on him and wrapped him up in a hat and scarf. Quadriplegics can't really tell whether they're hot or cold. So, I made sure that the nurse would check on him. He could start sweating and not know it.

I bought lunch and dinner there yesterday. The food was just okay. I'll have to supplement it for Jim. They gave him "little old lady" portions. Maybe I'll bring him a burger tonight.

Wednesday, January 26, 2011

January 26, 2011

Here's a photo of the front of TIRR. Jim is in the ambulance that will take him to the nursing facility.
Jim has moved to Manor Care Sharpview. 713-774-9611 It is on Bellerive which can be accessed off the 59 feeder, if you get off at the Fondren exit. It's right by Pappas Seafood. Or, if you miss it, continue on to Fondren, turn right, go about 3 blocks and turn right on Bellerive. There's parking in front and in back of Manor Care.

I'm spending the nite there tonight so this is just a quickie update. The congresswoman was moved to TIRR today so that hospital is in an uproar - security, cops, no parking, TV crews, etc. So, it was a good day to move Jim out - even though it is just to a nursing home.

Tuesday, January 25, 2011

Jany 25, 2011

Jim is being discharged from TIRR tomorrow morning and moved to Manor Care Sharpview. Hopefully, he will get good care there.

His ASIA (spinal cord injury measure) was ASIA C. He thinks that he was admitted as an A. So he has done well at TIRR. We are hoping that he will return to the hospital again soon as an ASIA D and learn to walk again.

Monday, January 24, 2011

January 24, 2011

Jim had a bone scan today. He went to the big Memorial Hermann hospital by ambulance twice. The scan was done in 2 parts. The doctor is checking out his spine.

Annette did an exit evaluation on him today. He has gotten stronger in his arms, especially his triceps. His right side is much stronger than his left. He could recognize when his knees and ankles were moved up or down. He had more trouble with recognizing the direction in which his big toes were moved.

Liza came by later to do the pin prick test. She asked him "sharp or dull" in spots all over his body. He did pretty well. He at least knows when and approximately where he is being touched.

He is regaining sensation and movement all over his body. We hope that as he becomes stronger that he will regain control of most of his muscles.

He is scheduled to be discharged on January 26th. The doctor moved the date back because of his bone scan today.

I guess I have gotten over the disbelief and shock stage of grief. I drive into the hospital parking lot without feeling bewildered that this tragedy has happened to me and Jim. I don't think that I have moved into the acceptance stage yet. But, at least I don't cry all the time any more.

This week Jim will be moving to a "skilled nursing facility" otherwise known as a nursing home. It's sad to think of Jim having to stay at such a place at such a young age. This move will take a lot of adjustment for both of us. We are used to the routine at TIRR. We know the staff, the building, etc. Hopefully, he will get stronger quickly and be able to return to TIRR for the second round of rehabilitation soon.

Sunday, January 23, 2011

January 23, 2011: Watch Jim on the national news!

Devoe, a friend that I used to work with, came to visit Jim today at TIRR. It was such a nice surprise. He just sent me the link to the video from ABC national news that has a shot of Jim using the hand bicycle. Note that he has to have his hands wrapped on to the handles. He isn't strong enough yet to grip them.

The shot of Jim goes by really fast. He comes on right after they show the front of the hospital.

Just click on the title of this post to get directed to the video. Or copy and paste the link below:

Saturday, January 22, 2011

January 22, 2011: Jim made the national news today!

Today when Jim went to exercise group there were a bunch news people doing interviews and taking videos. I signed a release that allowed them to film Jim. I turned on the national news on ABC at 5:30 and there was Jim. He was using the hand bicycle. He was the first person that they showed in the gym.

I asked Lupita to set the dvr but she was in the grocery store. She was able to tape the local news at 6 and there he was again! But, I really wish that I could have gotten the national news. Maybe he will be on again tomorrow.

I took photos of the news people filming him.

January 21, 2011 More baby steps

Liza helped Jim hold a pen. She made a device that holds a pen in his wrist splint. He was able to write fairly legibly.

Jim was able to sit on the edge of a gym table without support for almost 10 minutes. He only just tried this trick on Monday. He said on Monday he felt his back muscles activating. He could only just barely sit without support for a few seconds.

The therapists at TIRR continue to say that Jim needs to leave TIRR. They say he needs to get stronger. They just refuse to admit that he would be better off staying at TIRR for rehabilitation. So, next week they are discharging him and he will go to a nursing facility.

Meanwhile, Gabrielle Gifford will be taking up 3 rooms on the sixth floor at TIRR. 3 rooms normally holds six patients. She will probably get to have intensive rehab at TIRR for 6 months or more. But, my Jim has to go to a nursing home.

The truth is that TIRR is the best place for Jim. The doctors, therapists, case workers tell us that Jim will get rehab at the nursing home and that I should do exercises with him.

It will not be the intensive therapy that he gets at TIRR. To say otherwise is at best illogical, at worst it is a lie.

January 22, 2011 Bluetooth is not what it's cracked up to be.

I installed a bluetooth device today with Jim's cell phone. It doesn't work like we were advised that it would. It is not voice activated. I called Consumer Cellular. They only carry one phone that works by voice. But, first you have to push 3 selections on the phone's touchscreen every time you want to make a call. That doesn't work for quadriplegics. I've been researching on Christopher Reeve's website. It looks like there is another device that might work but it costs $400.

I'll check if Jim wants to spend that much. Maybe he'll get better finger control in a couple of weeks. So, I still can't communicate with Jim from home.

Thursday, January 20, 2011

January 20, 2011

This morning I heard the news that Gabrielle Gifford will be getting treatment at TIRR. I tried to call Jim and let him know. I wanted to tell him that it's good that he is leaving TIRR next week before the media circus begins. It's so hard not to be able to talk to Jim unless I go to the hospital. He can't pick up the phone yet. I hoped that a nurse would be in his room and hand it to him. I've ordered him bluetooth for his cell phone so we can communicate.

I had to stop at the front desk and sign in. There's more security in preparation for Ms Gifford's arrival.

Jim was supposed to get a bone scan. The doctor ordered it yesterday afternoon but he still hadn't gotten it when I was there this evening. He didn't ask the nurse or the doctor about it. I wish he would stand up for himself when I'm not with him. He could at least ask about the test. He didn't take his wheelchair gloves to OT or PT today. I put them in a bag with a big note to take them with him.

Andy phoned me today. I was at the office. He told me that there was so much family drama during the holidays and that I'm not positive. So, he hasn't wanted to be in contact with me. I tried to explain to him that I am in mourning. Yes, Jim is still alive and yes, he was/is a good and loving husband. But, I still mourn what his accident has done to him and to our lives together. Of course, we will do the best we can. But, grieving over this loss is quite normal. I can't pretend that nothing has changed.

I used to say that I didn't see my son as often as I'd like but he would be there if I needed him. I really need him now. My life has changed and it has changed me. Every day for the past 2 months I visit my husband as he lies paralyzed. I am not the cheerful person that I was a few months ago. I can't imagine how anyone could possibly expect me to be.

Tomorrow I will spend the whole day with Jim. I'll check with the doctor about the bone test, check on the use of a manual wheelchair and try to get a replacement for the missing kickstand on his night time boot.

Wednesday, January 19, 2011

January 19, 2011: A reprieve

Jim has gotten a reprieve from the doctor. He has been having lots of pain in his left hip. The doctor ordered x-rays and more tests to figure out how to ease the pain. This is a medical necessity so now Jim's official dismissal date is next Tuesday, January 25th.

I'm happy that he will get a few more days of intensive therapy at TIRR. At the family meeting the therapists said that Jim needs to get more strength so he can do more functional activities. His hands are not strong enough to do his own cath and bowel program. Plus, he doesn't have enough upper body strength to pull himself upright in the wheelchair. He would get this training at his next admission to TIRR.
The session would probably include learning to do his own sliding board transfer.

So, the group says that he cannot remain for more therapy. He has to go to a nursing facility to gain strength. I am going to try to hire someone to go the facility to supplement his physical therapy. The therapists keep giving us instruction sheets for home therapy exercises. I told them that I can't do all that. I go to work, go to the hospital and I'm just totally exhausted. The case manager said that insurance will not pay for a supplemental aide so we will have to pay it ourselves.

She said don't you have a family member that could do the exercises with him? Basically, Jim's family is just me. Maybe she thinks my 89 year old mother would help him out. My son, Andy is no longer communicating with me so I can't ask him for help.

I guess I should just be happy that we can afford to hire an aide for a while anyways.

Jim is in functional group right now where they are playing a card game. He was practicing on the pegboard before the group started. Now he wants his own pegboard to play with. I told him that I'd need to leave and go shopping for that. Of course, he prefers me to stay with him.

January 19, 2011

Last night Jim was pretty down when I left him. We spoke to Dr Wenzel and tried to get her to let Jim stay at TIRR longer. HR told me that it is up to the doctor not the insurance company how long he can remain an inpatient. She seems resolute on dismissing him tomorrow.

I told him that we have to set new goals at the family rounds this morning. The new goals I suggested aren't all that inspiring. I said that he should learn to do his own board transfers, cath himself and do his own bowel program. He, of course, wants to start walking. That is just too far down the road of recovery.

Maybe moving to the skilled nursing facility won't be all that bad. I like the pt guy there. Maybe Jim will get lots of attention. We fear that he won't get as much rehab as he needs and that he will not get as good nursing care there. But, he will get more privacy and I can spend the night with him. Maybe he'll make friends and not be bored there all day long. At TIRR he is kept very busy during the day and then he is ready to rest at night.

I worked all day yesterday and then went to the hospital. I left Jim at 8 PM and went to the grocery store. Mom called me and wanted me to buy dog food. I bought lots of groceries as long as I was in the store. By the time I got home I was totally exhausted. I was so tired but I didn't sleep all that well.

It's almost 8 AM. I need to get to the hospital very soon. I think he is getting evaluated this morning.

Monday, January 17, 2011

January 17, 2011 - last Monday at TIRR

This is the last week for Jim being a patient at TIRR hospital. He's doing so well that we just hate that he has to leave. It's the insurance company's decision, not ours. Thursday he will move to Manor Care Sharpview.

He played with the pegboard during occupational therapy this morning. He did really well! He could pick the pegs up and put them back in their holes. This is a manual dexterity exercise. He also was able to hold a cup and drink with a long straw.

We spoke with Todd, the rep for Permobile, the electric wheelchair company, too. He explained how Jim will be able to use bluetooth technology to move a computer mouse with his wheelchair hand controls. He said he would help Jim set the system up when his chair is delivered. I also ordered a bluetooth device for his cell phone. It will be great to know that I can stay in contact with Jim. I have to depend on nurses to relay messages now.

We went to the cafeteria for my lunch. Jim wanted the day's special - popcorn shrimp. He ate them mostly without my assistance. I put an ordinary plastic fork in his wrist splint. He was even dipping the shrimp in ketchup before bringing them smoothly up to his mouth. We are so excited that his fingers are getting stronger.

Jim worked really hard during physical therapy, too. He was working on balancing and exercising the muscles that he will need to do his own sliding board transfers. He needs to strengthen his hip flexors and hamstrings. Then he had functional group followed by group exercise. He got exhausted.

We went back up to his room. I shaved him and washed his hair. The tech got him back into bed. Then I fed him a chef salad for dinner. He fell right to sleep after he ate. He didn't sleep well last night. He had lots of pain in his legs. He had the tech move him and he asked for tylenol. It took one and half hours until the nurse brought in his tylenol. He was in so much pain then that he took tramadol, too. He said he finally got to sleep at around 2 AM. At 4 AM they woke him up for his bowel program.

The nurses and techs are being delayed by a new computer system being put into effect this week. There are IT people all over the hospital but still it takes much longer to input the data into the computer then it did before this new system.

Jim put in a hard day of workouts despite being so tired today.

Sunday, January 16, 2011

January 15, 2011

Nothing much to report and now that I think of it- that's really good news. Jim seems to have overcome the worst of his illness. His spasms and nerve pains are being well controlled by medication.

He is getting stronger bit by bit. We still are disheartened by his lack of hand mobility. But, it still may come back. He was able to pick up fritos when he was wearing his wrist splints and I put some on a tray on his lap. He said it wasn't worth the effort. I reminded him that the occupational therapist told him that a functional activity helps retrain the brain to control those muscles.

We participated in recreational therapy yesterday. A group of patients and 2 therapists played Uno. The other patients were all brain-injured. One couldn't speak or look at people. Another could walk and talk but was incoherent. I don''t know the prognosis for brain-injured patients. The news about Gabrielle Gifford, the representative that was shot seems contrived to be hopeful. It's reported "she sat up in bed." I know that means that she was in bed and propped up with pillows. Maybe she'll kind of recover but she'll never be the same.

It wasn't any fun playing Uno with the brain injured people so we skipped the next game. We went back to Jim's room and he was put back in bed. He says that sitting in his electric wheelchair is uncomfortable.

I turned on his new Roy Orbison cd and he immediately fell asleep. I let him nap for about an hour. Then I woke him up and fed him his dinner. I massaged his legs and butt to help with his pain. Then I used some dental tools that I purchased to try and clean his teeth. He keeps complaining about his teeth being coated with plaque. I hope that a dentist visits the nursing facility so that he can get some professional help. I'm afraid that I will hurt him.

Saturday, January 15, 2011

January 14, 2011

This is a photo taken on the fifth floor. We made friends with this older couple, Helen and Paul. They were on their way home. I really enjoyed talking with Helen and I'll miss her.

The woman on the left is Dr. Wenzel, then Helen, the big guy is one of the techs, Lafayette, Paul and a fifth floor nurse, Sara.

Thursday, January 13, 2011

January 13, 2011: WHY?!

I don't get to see much TV anymore. But, I did see a bit of news on Haiti's recovery from the earthquake that struck there one year ago this month. The photos from last year and this year were so pitiful.

One young Haitian boy was shown lying in a pile of rubble screaming "WHY, WHY?" repeatedly. That "WHY" keeps echoing through my mind.

I am not able to make up a story for myself to explain the why that caused Jim's accident. Yesterday one of the paraplegics on the bus to Target said that his accident was God's way of slowing him down. I'm sure that thought gives him some peace. But, it's just that - his thought.

There may be a "why" for what happens in our lives. I'm personally not willing to construct an answer for myself. I know that this goes against what many religious people think. They tell themselves that it's God's will. That may be the answer but it gives me no solace. It does not repair the lives of the tragic victims in Haiti or mine.

I think that the "why" is unknowable. It happened and it really sucks. We have to deal the hand we are dealt. Crafting a story to give our lives meaning is just that - a story.

Wednesday, January 12, 2011

January 12, 2011: trip to Target

We had rounds at 10AM today. Nothing new. I did confront the doctor about what she told Jim yesterday and she was apologetic. Jim may want to switch to Dr Berliner. It's his decision.

I took Jim to play on the 5th floor computer. He tried working the mouse. Then I tried it - it was very jumpy. I'll have to bring my laptop in and he can try my mouse.

At 1 PM we gathered at the front door with 5 other patients and 2 more wives. They loaded us all up in a big bus for our trip to Target. Jim wasn't really interested in anything until we got to the music section. He picked out a couple of cd's. I bought him another pair of pj bottoms and some mittens. He did 3 weight shifts while we were there.

It was just so surreal. The last time we were there together Jim was taking care of me. It's very difficult every time we do something again for the first time. I keep wanting to "wake up" - like that episode in "Dallas" when Bobby's wife woke up. She had only dreamed that he had died. Oh, I wish that would happen to me! Tomorrow morning I could wake up and Jim would be snoring away beside me.

I left the hospital when the bus brought us back. I didn't want to have to drive in icy conditions. I've been working in Jim's office trying to sort the bills and other papers. That was horribly sad also. He had left notes about day trading on his desk. He may never be able to write again so looking at his handwriting started up my tears again. I persevered and got a lot of filing done.

January 12, 2011

It's in the 20's in Houston this morning. I sure hope that the insulation on the water pipes outside protects the house. I would have to face a house emergency all by myself. I need to do more research on senior housing. If we move to an apartment, I wouldn't have these worries.

Jim is going on an outing this afternoon. There is a busload of wheelchair bound patients going to Target. I'm bringing Jim's winter coat to the hospital today. Poor Jim - he hates the cold. Last week it was in the 70's.

My knee feels better this morning but it still hurts. At least I'm not going into the office today. Maybe I'll take my scooter with me.

Tuesday, January 11, 2011

January 11, 2011

This morning I was walking down the hall at home and my new knee started to go out from under me. I must have twisted it. It swelled up and has hurt all day.

I couldn't phone Jim and tell him that I hurt too much to go see him. So, I went to the hospital. I only stayed about 2 hours. He was in a depressed mood. Dr. Wenzel told him during rounds that he should be prepared to live with what he has. That really bummed him out after his progress yesterday.

Tomorrow there are family rounds at 10 AM and I will confront Dr. Wenzel and ask her why she would say that to Jim.

Monday, January 10, 2011

January 10, 2011

I got to TIRR at 9:30 today. At 10 AM Jim and I met Liza in the gym. Liza wanted me to be there when she made recommendations for Jim's power chair. She will write up a report for the insurance company indicating why he requires this special chair. He has been using a similar chair at the hospital for the past couple of weeks. Then the doctor writes a prescription for the chair and it is submitted to the insurance company. Once it is approved, the order is placed. His chair has to be able to tilt back so he can shift his weight to prevent pressure sores. It also will have a special thick cushion for his bony butt. It will have bluetooth capability so he can work a computer and a phone. It is supposed to help him function in the real world.

Wednesday he is going on an outing in his power chair from TIRR. It is a trial run to see how he does is in a public place. Liza will also document this for the insurance company. They will decide tomorrow where the outing will be - there are a group of 4 or 5 going.

Jim was able to kick his right leg almost 90 degrees against gravity today. His left leg only went about 45 degrees. He can raise his wrists to the neutral position but he can't get them higher yet. He also was able to move his right buttock muscle. So, he is continuing to get more return. The swelling in his spinal cord must be going down.

I went to the office at noon and returned to the hospital after 5. I fed him his dinner, did his stretching exercises with him and put moisturizer on his legs and face. I left around 8 and went to the grocery store. Magda was Mom's caregiver today. She cleaned the litter boxes, washed clothes and put out the trash for me, besides watching Mom. She is really a great help.

Tomorrow I have to work 8 to 5 so I have to get to bed now.

Sunday, January 9, 2011

January 9, 2011

Yesterday I decided to visit Manor Care again and see what this nursing facility was like on a Saturday morning. I was able to meet a couple of patients, an occupational therapist, Holly, the nutritionist, a nurse, Wanda and the mother of a patient. This poor lady, Vickie, brought her 60 year old son there after he had a massive stroke. Before that he was taking care of her. So many sad sad stories. I've decided that this is where Jim should go after TIRR. I've looked at 4 nursing homes and I like this one the best. I could visit several more but they are not close to either home or the office. I need it to be close so I can spend a lot of time there with Jim.

Last night I went right to bed so I didn't blog. I decided to get to the hospital very early this morning so I could learn Jim's bowel program. I got to the hospital at 6 AM. Not all that much to it. I did learn that Jim needed to be getting stool softeners. I was there when the weekend doctor made his rounds and spoke to him about it. Jim's already had his first dose.

I cathed him twice yesterday and once today. The only difficulty is trying to hold slippery stuff while wearing gloves but I'm getting the hang of it.

After Jim's bowel program his roommate started on his. So, I left the room and went to the cafeteria. Then went back to the room and did the stretching exercises with Jim. His tech, Deborah was willing to give him a shower so I helped her. After that I fell asleep in the chair. The weekend nurse, Mary wanted to wake me up to do the next cath but I told her I wanted to sleep.

I woke up around 1:30 PM and got the tech to put Jim into his chair. Then we went to a weekend recreation group. We played UNO with one of the therapists, Lauren. Jim worked hard to try and pick up the cards. His right thumb is working pretty well but his index finger is not very cooperative.

We went to the cafeteria and he watched me eat a grilled chicken breast sandwich. Then we returned to his room. He finally trusted me enough to shave him. I did a good job - no nicks. He looks so much better.

Jimmy Perry came to visit him around 5 PM and I decided to leave. So, I'm having a early evening at home. I'm going to work on Jim's papers and clean up his office. That's where we keep all the tax records, etc.

Friday, January 7, 2011

January 7, 2011

Jim and I had a consultation with Dr Wenzel. She is his spinal cord doctor. We saw the first MRI taken of his spine. The spinal cord was already compressed at C2-C7 because of bone spurs caused by arthritis.

He fell from the toilet and landed face first. It was a freak accident. If he had fallen differently, he would be up and walking as usual. Because his spinal cord was already compromised, that little fall was enough to further compress his cord and cause paralysis.

Jim asked the doctor if he would ever be 100% again. She said that it was highly unlikely. Possible but not probable.

She said that he will probably need to stay at the nursing home for 2 to 3 months. She then will reevaluate him. If she thinks that he has regained more movement, especially in his hands, then she can try to get him readmitted to TIRR. At that time they will try to get him more functional. She said that meant training him to do his own catherizing and bowel program.

This, of course, is not what we wanted to hear. He says that he can't give up hope and will keep working hard to get better.

Tonight he stayed in his chair through dinner. I put the fork in his wrist support and he was able to eat a small bowl of vegetables. The therapists say that the brain responds better to function over just exercise. So, raising the fork to his mouth may lead to better hand control.

I went back to Manor Place today. I thought I'd asked all my questions. Then the doctor said to ask about intermittent catherizing or the use of a foley. Usually nursing homes use a foley catheter. His nurse said that I really should go meet the nursing staff.

Next week I plan on spending the night at the hospital so I can learn how to do his bowel program. I don't trust the nursing home staff to do it consistently.

As I write these words I look around at my pretty family room and all our pretty things. We worked hard on putting this house together to be our home. I always thought that if I had to move again, at least I would have Jim to help me. Now, I think that the 3 of us will have to move to a senior living community. I need to weed out our "stuff" and select just the important things. I'll have to give up my studio. If Jim regains the ability to use a computer he will have to have room for an office so he can work.

It seems like an impossible job ahead of me. How can I possibly find us a new apartment home, dispose of most of our things and sell this house - all by myself?

Thursday, January 6, 2011

January 6, 2010 PM

Jim was in good spirits this evening. He felt well and was able to participate in his therapies today.

Tomorrow I'm going back to check out Manor Care. One of Mom's caregivers, Alberta, says she sat with a lady there. She thought the staff was good. Another woman told me that they don't like to do bowel programs but that their pt is good.

Jim has to continue his bowel program. It's pretty gross so I won't describe it. If Jim gets stopped up (which is easy when you're confined to a wheelchair) he can get nauseated and weak.

Unfortunately there are no nursing facilities that specialize in spinal cord injuries. I will just have to be very vigilant when he goes to the nursing home. I hope he will become stronger in these 2 weeks at TIRR so that he will be able to take over some of his own care. He will have to be proactive in his care, too.

January 5, 2011

Yesterday Jim was a guinea pig for a group of students learning about breathing problems in quadriplegics. He had a wonderful time being the center of attention for these 4 young women. They spent 2 hours with him trying to get him to use his upper chest and side muscles along with his diaphragm for breathing. They could see that he had activation in these muscles but he was using his tummy muscle for breathing. The upper muscles on the chest are controlled by C-7 or lower. His injury was at C-5 so he was using his tummy & diaphragm to breathe.

They took his shirt off to watch his muscles move. They found a rash under his right arm. I showed it to his nurse who will talk to the doctor. It is probably a yeast infection from his armpit being moist with his arm down most of the time. He also has another urinary tract infection. He very susceptible to UTI's because he has to be catharized every 4 hours. The doctor said that his earlier nausea was probably caused by the UTI. That is good for me to know. He is getting good care at TIRR. I will need to really watch him when he goes to the nursing home.

Jim was exhausted after his breathing session and fell asleep right after I fed him dinner.

January 6, 2011: What to say...

This morning a cashier told me to be happy and that things could always be worse. I told her that that thought wasn't at all comforting because I KNOW things can be a lot worse.

A simple "I'm so sorry for what you are going through." is a whole lot better. It is the truth and doesn't make you think of how much more pain is possible in your life.

Today someone else told me that you can always purchase health insurance if you're not employed. I guess that's true - if you don't have any major pre-existing conditions and if you're independently wealthy. The republicans are busily promoting the idea that our country doesn't need a health insurance plan. I understand why they say that - the wealthy people funding the republicans want to continue to be excused from paying taxes. Many of them own shares of insurance companies. What I don't understand is why regular non-mega rich Americans believe them.

Universal health insurance would give people the opportunity to start small businesses or continue to be employed by them. Small businesses cannot afford to offer their employees health insurance. Have you noticed all the small companies disappearing and being replaced by Walmart, FedEx, Barnes & Noble, etc.? Many Americans are forced to stay at jobs with poor working conditions to keep their health insurance benefit. Large companies have way too much power over their employees' freedoms.

Top executives in the US often make 200 times the income of their employees. In decades past it was 20 times. In Japan top executives still make just 20 times the salary of their average employee.

I do not want to supplement the income of people earning BILLIONS per year by denying health insurance to the middle and lower classes. We need universal health care in this country!

January 6, 2010: Accidents happen to anyone.

Jim has become the "stair nazi" at TIRR. The therapists have their offices on the second floor of the gymnasium. Jim watches the therapists, mostly young people, run up and down the stairs. He calls out to them "use the handrail." His own PT therapist said she couldn't hold the rail because she was carrying things in both hands. Do they not pay attention to all the pain that surrounds them every day at work - the agonies of their paralyzed and brain injured patients?

He also is being super careful of other people when he is using his power chair. His hand still slips off the controls.

Yesterday he was trying to have an older couple move to the side of the elevator so that he wouldn't accidentaly run over their feet. They told him "you have plenty of room." He told them that accidents happen. He told them that all he did was fall off the toilet and now he's quadriplegic. The couple just kind of looked at each other. I could tell they didn't believe him.

It must be a protective mechanism. "It can't happen to me" belief. Maybe that's why I am in such great emotional pain. I've lost that simple innate protection. I know that horrible things could happen to me, to my loved ones, to anyone. That knowledge is unbelievably painful.

Freak accidents just happen. It doesn't matter if you are a vegan, a devout religious person, a bodybuilder, a young person. Something catastrophic could happen to you. Enjoy what you have while you have it.

Unfortunately, even though I advise everyone to live for the moment and enjoy the good things in their lives, I can't take my own advice. Life is just too painful right now. Jim IS progressing, albeit, at a snail's pace. But, I mourn my old life with him. I am anxious about what our new life will bring. I've lost the simple armor of denial and I know that worse things are possible, no matter how much I pray, how careful I am, what I eat, how much I exercise, etc, etc.

I am fighting to remain strong. Having lost the delusion of control over my own fate makes it very difficult.

Tuesday, January 4, 2011

January 4, 2010: Isn't it ironic?

Today I walked from my office in Sewall Hall to the Baker Building and over to the Student Center and then back to my office. I haven't been able to walk that far in almost 2 years! In March 2009 I tore my achille's tendon in my left leg. After over a year of phys therapy I had it repaired in May 2010. Then I had my left knee totally replaced in July 2010. I walked today without pain.

Isn't it ironic? Now I can walk and Jim can't. He is much more handicapped than I ever was. When we were together he parked in handicapped only parking spots. We used to joke that he had the best of 2 worlds - not handicapped but able to park in those convenient spots.

Jim took great care of me after my surgeries. I am doing my best to take care of him now.

I will be leaving the office in a couple of minutes to go to the hospital. Yesterday he was in so much pain. Today I spoke to his nurse, Lonnie. She said he is out of pain but very sleepy from the pain meds. Yesterday and today he wasn't able to participate fully in his rehab.

This long drawn out process of rehabilitation is bad enough without these setbacks. It is so disheartening when a week goes by without improvement. Yesterday he said he couldn't feel his legs. He said his fingers felt cold and dead - no movement or feeling. Last week he could move his thumbs and one of his index fingers slightly.

When he feels bad, I feel horrible.

Monday, January 3, 2011

January 3, 2011 PM

Jim didn't feel well today. He was having lots of neurological pain in his knees. He didn't feel well enough for functional or exercise group today.

The doctor gave him tylenol. He might have to take tramadol later in the evening. Tramadol makes him sleepy for 24 hours so I hope he doesn't need it. I massaged his legs and he said they felt a little better.

I left him at 6:30. He said he was falling asleep anyway.

I visited another nursing home today, Garden Terrace. It specializes in alzheimers patients. It has a good reputation and also does regular rehab. It was okay. Alarms kept going off while I was there. They told me it was notice that patients were trying to get out of bed. I think the noise would drive Jim crazy. I need to revisit the other 2 homes again- University Place & Manor Care. I have more questions for them.

January 3, 2011

I'm working today instead of Wednesday morning so I can be with Jim during family rounds on Wednesday.

Kevin and Tomoko have safely returned to Japan. It was great fun having them visit.

I'm leaving the office soon to look at another nursing facility for Jim - Garden Terrace. Then I'll meet up with Jim in TIRR's gym. He was doing well yesterday. I tried doing exercises with him over the weekend so he wouldn't lose any ground in his rehabilitation.

Sunday, January 2, 2011

Hallelujah! The holidays are over.

I've always loved the winter holidays, especially the most important day of the year - December 28th (my birthday)! The holidays have just been incredibly difficult this year with Jim so sick.

It was wonderful to see Kevin and Tomoko. I had so many plans of things to do and places to go with them. I wanted to show Tomoko my favorite places in Houston. Instead they got to visit the hospital. They were so supportive of me and Jim. Jim just loved when they would come to visit him. They would stay for quite a while and talk with us. Thanks Kevin and Tomoko! You make a wonderful couple.

Unfortunately my older son and his girlfriend have not come to see Jim. I'm not sure why. Jim was always good to Andy. It wouldn't take much of his time to come to the hospital - he lives about a mile away from TIRR. I wrote an apology to Nina but I'm not sure if she read it. I can't force anyone to forgive me. But, their behavior has really injured me. So, I guess, if the point was to get even with me, it has worked really well. I am very hurt but I am ready and willing to forget and forgive the past and go forward.

Jim is getting better slowly. Tomorrow I have to go back to work. I hope to visit another nursing home tomorrow afternoon. I'm trying to find the best place for him to get more rehab and good nursing care. I miss having him home but he needs so much care. If he stays at a nursing facility, he will receive on site rehab. It just won't be as intensive as the rehab at TIRR.

Saturday, January 1, 2011

Happy New Year!

Grandma greeted the new year in style. Kevin and Tomoko couldn't stay awake until midnight. This is the last night that they'll spend with me. They will be flying back to Tokyo on January 2nd.

December 31, 2010

I bought Jim a big contoured pillow today to help prop up his head. Then I put the baby yarn that I bought to make a blanket on top of him. He's so sweet - he didn't struggle when I put the little snowflake tiara on him.

The nurse is taking a drop of blood from his finger to measure his sugar before he eats dinner.