April 29, 2011: My new baby

Here's a photo of the baby kitten that I found on Monday in my doctor's parking garage. I named her Stella after the doctor I was going to see.

She seems to be thriving. She was taking goat milk very nicely. Today she doesn't seem to like it so much.

She wants to be with someone all the time. Last night I had her in the large pet carrier next to me in bed. She slept through the night. I was afraid that she would wake me up a lot.

She's been pretty demanding today. She likes to get out of the cage and crawl around. She crawled under the filing cabinet and seemed to be stuck. She has to be watched all the time that she is loose. I think I need a big playpen for her!

April 29, 2011: Back at TIRR

Jim returned to TIRR on Wednesday, 4/27/11. The admissions office wanted him there as early as possible. Luckily Amy wasn't Jim's nurse so we didn't have to deal with her. The admissions lady called me on my cell and wanted to get in contact with someone at Sharpview. For some crazy reason she thought I was bringing Jim to the hospital myself. So no one called for an ambulance. Finally I convinced Nishwani that we did indeed an ambulance. It arrived around 1 PM. I stopped at the house to feed the kitten and then drove over to TIRR.

Jim was placed in the overflow fourth floor. Most spinal cord patients are on the fifth floor. The staff wasn't even ready for Jim. He did a lot of waiting around in bed. Then the doctor's intern came in and performed the ASIA test on Jim. He said that Jim left as an ASIA B, C-4 in January. He tested ASIA C, C-5 this time. This is a big improvement!

On Thursday he was tested by the OT and PT. He got very little rehab that day. Today he had OT in the morning. I was there for his 2 PM PT with Jessica. She continued testing him and then they did some therapy. Jim was able to stand up using the EVA gizmo. He said it was easier than using the parallel bars at the home. He did really well as you can see in the photo.

He was in pain on Wednesday night in TIRR's hard bed. He had no pain at the home in his big bed. His morning nurse, Angela got him an airbed that folds up like a chair. He was much better Thursday night.

Tirr is doing sonograms on Jim after he uses the urinal. They say he doesn't empty his bladder all the way so then they catharize him. We asked the doctor to give him more time to do it on his own.

I spoke to Dr Berliner today. He said he would take over Jim's care but first he has to talk to Dr Wenzel. He says he is not afraid of stepping on toes. Jim likes him much better personally. He seems to be much more positive than Wenzel. Berliner is also working with Rice on the walking machine trials. That sounds promising.

Jim was so tired this evening from lack of a good night's sleep that I was able to leave at 6:30. I came home to take care of my baby kitten.

April 26, 2011

I received a call from the admissions office at TIRR around 1 PM today. There was a bed available but I had to get Jim there by 6. I said I wouldn't be able to do that. The woman, Revelyn(?) said she'd see if she could hold it until tomorrow. I called her back at 4:30 and they will hold the bed for Jim. He needs to be there late morning or early afternoon tomorrow.

I think this proves that TIRR is has a strong connection to Aetna. I have heard about people waiting weeks to get a place at TIRR. Aetna said they wanted Jim back at TIRR and they got it.

Jim has been doing so well at Sharpview. I am a bit apprehensive about this move. I hope we will be able to switch doctors. I dread hearing the repetitions that they make at TIRR. It's like there are certain things that must be said so they repeat them over & over again. The doctors and therapists seem so regimented.

Lupita and Jimmy were visiting Jim this evening. They were kind enough to pack up a bunch of Jim's stuff and bring it over. There's still LOTS more to pack tomorrow. I plan on getting there around 8:30 AM.

I'll have to take my baby kitten with me tomorrow morning so she can get her bottle. She went to the office with me today. I took her to the vet right after work. She thinks Stella is between 2 & 3 weeks old. She tested negative for feline hiv, heartworms, etc. She had fleas and I treated her with stuff from the vet already.

The vet suggested feeding her goat's milk. She really likes it. She is so cute drinking from her little bottle. I'll have to try and video her. She is the most precious little baby girl.

I had hoped to rest a bit this evening. Instead I'm washing Jim's clothes, putting some of his stuff away and trying to pack up what he will need at TIRR. I'm exhausted again. I am so tired of being so tired!

April 25, 2011: I found a kitten!

I had a doctor's appointment yesterday at 11:15. After I parked the car I was walking across to the building's entry way. Then I heard some sad mewing. There was a little baby kitten all alone on the walkway near the elevator.

Of course, I had to pick her up. She is tiny - maybe 3 weeks old. I went back to my car and got a tote bag. I put her in the bag so building security wouldn't try and stop me. She stayed quiet all through my appointment. I've named her Stella because that's the doctor's name and it's cute.

I went to Petco and got kitten formula, bottles and a soft carrying case. I took her to the nursing home with me since she needs to be fed every couple of hours. Everyone loved her.

This morning I have her in my office with me. I'm taking her to the vet right after work. I hope she gets a clean bill of health. She is just the cutest little calico kitten.

Jim called me this morning to check on her. He said that I looked so happy holding the kitten. I hope that I can make the time to care for her.

April 25, 2011

I need to be cleaning up the house, not playing on the computer. But I feel like just sipping coffee and relaxing. My sitter of the day, Magda, will be arriving at 10 AM. She puts Mom right into the shower so I have to wash up before she gets here.

I would love to spend the day at home today. But, when I'm not with Jim I feel guilty and I do miss him. I'm going to compromise today. I have an appointment with Stella at 11:15. I'm going to come home after that and do some cleaning. I can't work too hard because I'll be too tired when I go visit Jim. There is always so much work to do when I visit him. I clean up his room, fetch his water bottle, find a bib for him, get his night things ready, etc. etc.

I'm trying to keep myself from burn out. It's tough.

April 24, 2011

Five months ago at this time I was sitting in the ER while Jim was getting x-rayed and MRI-ed. That night began this terribly difficult journey.

This may have been our last weekend at Sharpview. Jim will admitted back to TIRR as soon as a bed becomes available. I carried some of his things home with me to get prepared for the move.

Jim was acting very bossy today. He wanted me to wait at the back door while Florence rescued a baby bird in the rear courtyard. He has the room next to the back door. I wanted to watch her out the window in his room. He was getting all upset that I wasn't doing what he wanted. When she started heading back to the door I got up and let her in. Maybe she waited 10 seconds for me to open the door.

I think he really wants to be in control. He must feel so powerless stuck in bed or his wheelchair. However, even though I understand I don't want him to get angry with me. I felt like just going home. But, I stayed with him until 7 PM.

We just sat around all day. We were feeding the birds when we were surprised by Lupita wheeling Mom up the sidewalk. She misses Jim, too.

After they left we went back inside and talked with Marty, the guy who hangs out at the nursing home. Jim was happily talking about music with him. Marty can play a song by ear on the piano. I sat listening to them while I sewed a little doll pin.

After Marty left we went back to Jim's room. Jim got his blood sugar checked and got his meds. Then we had another surprise. Jim and Honey came to visit. They were so sweet to come and visit us. They stayed until Jim's dinner tray arrived.

I helped Jim with dinner and set up his teeth brushing stuff. He got mad at me again because I hadn't left the bathroom door all the way open. He had to push it with his chair.

It's hard enough to spend 99% of my free time with Jim at the nursing home. It's even harder when he gets mad at me.

I'm feeling stressed because I know that his time in TIRR will be difficult. TIRR tries to get the family to do all the day to day care of the patient. Last time I injured my back right away and it still hurts. TIRR doesn't even provide soap or a toothbrush for their patients.

I worked very hard caring for Jim when he was at TIRR. I'm not looking forward to injuring myself again. Plus, it's emotionally difficult there. The doctor and therapists keep trying to push you out the door. I don't understand why. They know spinal cord injured patients need lots of care. Why are they in such a hurry? Is TIRR somehow indebted to an insurance company?

When we saw the doctor on April 5th she seemed unconcerned about Jim's need for treatment and overwhelmingly worried about the insurance company. That kind of behavior is emotionally draining.

TIRR has superior equipment and Jim will see a doctor every day. I hope it will be a more positive experience for both of us during his second round at TIRR.

April 21, 2011

Jim was in the middle of physical therapy when I got to Sharpview yesterday. He was having electric stimulation on his left thigh while he laid on the mat.

The he rode over to the bar and practiced standing up. He stood up more easily and stayed up for 5 minutes. He was able to sit down easier, too.

Lupita will be going to exercise and massage him this evening. I will be going straight home after work. I should clean up the bedroom. Since Jim isn't home I throw my clothes all around the room. I'm usually too tired to bother picking them up. But tonight is the big "clean up" night.

I have to work all day tomorrow also. I am making up for taking 4/5 off for Jim's TIRR appointment. I don't think anyone will be in the office tomorrow so it should be an easy day. It would be nice to be able to leave early and go visit Jim. It's Good Friday tomorrow so the dean might close up early, I hope.

The Mother's Day card that I made.

This is my brother John and myself just a couple of years ago.

5x7 Folded Card

View the entire collection of cards.

April 19, 2011

Jim and I had a pleasant weekend together. Our friends, Laura and Kevin came to visit on Sunday. We played "Password." It's a good game for couples. Jim and I won! We had a great time.

Yesterday I received an email from TIRR's OT, Liza. She said that Dr Wenzel had put in the readmit order. I called TIRR's admissions office and they did indeed receive the order.

The nursing home PT's are doing a great job getting Jim stronger. His OT is very good, too. But, Jim's fingers are still curled up. Dr Wenzel says that he has clonus. It's treatable. So, he especially needs to get back to TIRR for help with his hands. The treatment may be botox injections, progressive casting, etc. If he can move his legs and urinate on his own the part of the spinal cord that controls fingers should be coming back to.

Jim is working very hard and making great progress.

He has a friend at the home now who is close to his age. This guy broke his leg in several places. He was drinking with friends at a freeway underpass. He had climbed up the sloping back wall of the underpass and then fell coming down. He talks a lot about drinking and smoking. He sat outside with us one evening and kept asking everyone who came in if they had a light. The nurses had taken away his lighter.

Last Friday he took his wheelchair down the street to catch a bus. He wanted to go to a store and buy beer. Ernie (the other ex-TIRR patient) saw him going down the road and went in and told the staff. They sent out a posse to round him up. They are trying to keep close watch on him now. One nurse even asked me to help watch him.

I'm sure they are only worried about liability, not the patient. I'm not sure if I would tell on him or not.

Jim and Gary eat lunch together in the dining room. That's nice that he has company when I'm not around. We even got him to play Uno with us one day and to listen some of Jim's oldies cd's.

April 15, 2011: Standing up!

Here are photos of Jim getting into a standing position. He stood up and sat down 4 times today with mod to min assistance. He was able to keep standing up for 5 minutes at a time with minimal assistance.

His PT, Clay, said that he could feel Jim's muscles working and his weight shifting through his ankles. Standing up will help get more of his trunk and leg muscles to wake up and get back to work.

Yesterday I wrote an email to Dr Berliner with a copy to Sonia. I haven't heard back from either of them. I wonder if Dr Wenzel has gotten around to making the readmit request for Jim yet.

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April 13, 2011: another step forward!

I got to Sharpview about 1:45 today and Jim was doing PT with a new guy, Clay. They were working on board transfers. I asked Clay how much more PT Jim would need to be able to stand up. He said that Jim had a long way to go yet.

Later, Jim had OT with Holly. He worked on lifting himself up off the chair using the hand bars in the gym. After a few tries Jim was able to almost come to a full standing position with just minimal assist. I was standing in front of him and he gave me a kiss. This is a big milestone for him. Clay saw him and said that maybe he didn't have that much farther to go to stand.

I wanted to take a photo but Kevin, the head PT wouldn't let me because of the hippa law. I'll try again on Friday.

As of yesterday Dr Wenzel had not written the readmission request for Jim. I've emailed her, Liza and Sonia, the social worker. The insurance company wants Jim to get readmitted to TIRR. Since the doctor acts like she works for Aetna, not TIRR, I would think she would hustle and get the request in. I've left phone messages for her, also. Her assistant quit and no one has returned my calls. I'll try again tomorrow.

April 11, 2011

Jim and I had a quiet weekend. We watched a movie, fed the birds and visited with some of the other patients.

We watched CBS Sunday morning together. Jim fell asleep about halfway through. I took a nap after the show ended. It's hard to get a good night's sleep at the home so naps just happen.

Jim's physical therapist, Lois is on vacation this week. I hope her stand-in will do as good a job as she did.

The morning nurse, Amy and I ignored each this weekend. It was a lot better than her yelling at me.

I made scrappy flower pins for the nurses and aides. I spread them out on a tray and let them choose. They seemed really happy. Florence didn't wear hers because she didn't want to make Amy angry. I'd give Amy a pin, if she would just be nice for a change.

I have a therapy appointment this morning. I didn't feel like I got much out of our session last week. I'll give her another try today. I might have to try to contact my old therapist, Peggy Landrum. She was much better but she is not on my health insurance plan and is farther from home.

I checked with TIRR's admission department on Friday and they still had not received Dr Wenzel's request for Jim's readmission. I'll call again today. TIRR has more resources and experience to help Jim get better.

I'm hoping that TIRR will get Jim to at least be able to pull himself upright. Then he will be able to transfer to a car and go to outpatient therapy after his discharge.

I am in less pain now that I have accepted Jim's illness. Before I would wake up, look for him and be hit with reality all over again. Each time it felt like the accident happened again and I would have to go through shock once more. I would tell everyone about Jim's accident. I was trying so hard to accept it. Wellbutrin has enabled me to finally move onward in the grieving process.

April 8, 2011: I am truly sorry.

I've been going through hell the last few months and am very stressed out.

But, that is not an excuse for hurting anyone's feelings. I'm sorry for anything that I've posted that has caused anyone pain.

My mother always told me "to think before you speak!" I wish that I had taken her advice.

When I'm blogging I don't think about who may be reading my posts. I get into a zone of just saying what's on my mind. I don't think before I write anymore than I think before I speak. I'm really trying to change that and be more mindful about what I say/write.

I've written apologies to Andy and Nina. I don't know whether they've read them or not. In case you read my blog, I'm sorry for the mindless remarks that I have made to you, Andy and Nina. I can't go back in time and take them back. I would if I could. I hope you will forgive me someday.

I'm emotionally drained right now. I worry about Jim constantly. I worry about whether I should buy an accessible van for his wheelchair. I worry about whether I should sell my house and move us all into senior living apartments. I worry about how I'll be able to care for Jim when he returns home. Where will I put his hospital bed?
Should I widen my bathroom doors. Will he ever walk again. My worries go on and on.

The doctor at TIRR told me to take one day at a time. So I haven't bought a van, remodeled my bathroom or found an apartment. I'm trying to take one day at a time. But, the doctors, insurance people, social workers keep wanting to send Jim home as soon as possible. I've got to plan some day.

But, I've gotten off track. I've said stupid things in the past and I am truly sorry about it. I'll try to do better.

April 8, 2011

I'm almost ready to go visit Jim. When I'm not with him I feel guilty. When I'm with him I get totally exhausted. I didn't go yesterday because I worked till 5. Our friend, Jimmy went to keep him company yesterday evening.

My son Kevin called yesterday morning with the results of Tomoko's sonogram. They're having a boy! I've got to go buy more blue yarn. They are so excited about the baby. I think they will make great parents.

April 6, 2011

My son Andy called me today. Even though it was a heated conversation it was nice to hear his voice again.

I write this blog because journaling is a form of therapy for me. Andy didn't appreciate me blogging about him. I don't write this blog to communicate with people personally. If I want to say something to someone, I will. I won't be posting on Andy anymore. I don't want to hurt his feelings. I will find a separate page in this blog that doesn't interface with facebook to work on my feelings that deal with him.

I've kept diaries since I was about 12 years old. I still have them.

Originally this blog was to keep track of the books I read so I wouldn't buy duplicates. Then it became a way to showcase my wearable art and crafts. I even wrote tutorials on this blog.

After Jim had his accident this blog became a way to communicate his status with family and friends. I couldn't talk to people because I kept crying. I'm better now and I do speak freely again.

Lately, I've been using this blog to hash out my feelings over the events in my life in addition to keeping family and friends informed on Jim's progress.

I find my old diaries an interesting window into my younger self. I hope that one day I will read over my blog posts and be proud that I made it through this troubling time in my life.

April 5, 2011: Doctor's appointment

I spent last night at the home so I could go with Jim in the ambulance to his doctor's visit at TIRR. The ambulance came at 6:30 AM so we had to get up really early.

We arrived at TIRR at 7:15 AM for the 8:00 AM appointment with Dr Wenzel. The doctor said Jim had gotten much stronger. She said she will fill out re-admit papers. Jim will be able to go back to TIRR for the second round of therapy - depending on insurance approval and space at TIRR.

The doctor acted like she worked for the insurance company, not TIRR, and especially not for the patients. I gave her a copy of my orthopedist's letter stating that I'm not strong enough to care for Jim. She asked if there was anyone else at home to help. I said only my 90 year old mother and she isn't strong either.

The doctor was very concerned that we have a caregiver who can handle Jim and be willing to go to TIRR for training. I said that we did. She asked me the same question at least half a dozen times. She said that the caregiver would have to be trained early during Jim's stay. The doctor is so interested in getting Jim back home. I want him back home, too, but he needs to be able to do more for himself.

I told the doctor that our insurance won't pay for custodial care. She wanted to know if we could afford to get help. I said that I guess we'd have to or Jim would have to just lay in bed in his own mess. Or I would break my back trying to take care of him.
I told her that we have no money coming in so of course, it would be a financial burden.

We have to have "functional goals" for Jim's next stay at TIRR. I said I'd like Jim to be able to transfer himself without much assistance and use the urinal by himself. I'd like them to work on his hands, too. His fingers are so stiff. The doctor said that Jim has "clonus" in his hands. She said that they could try different techniques to help him regain use of his hands.

Hopefully, he will be readmitted soon. I'm afraid that the insurance company will want to toss Jim out of the nursing home before he can get back into TIRR.

March 31, 2011: Good News

For the first time in over 4 months Jim urinated on his own, no catheter! This is really a giant step forward for him. He said it made him feel more normal. The doctor's assistant, Ray, had given him a urinal last week because he thought Jim was ready. He said we just had to figure out the logistics.

Jim's fingers were working better, too. The new night time gloves kept his fingers straight so they were not so tight in the morning.

He is doing better on board transfers also. Tomorrow his PT, Lois wants to teach me how to assist him. She said it won't take any lifting from me. It would really help when Jim comes home.