Thursday, March 31, 2011

March 28, 2011

At 8:30 this morning I called the home and spoke to Tina, the head of nursing. I told her that I was concerned that Jim would not be taken care of until I came in later in the morning.

I told her how Jim's call light was ignored on Sunday afternoon.

Tina asked me why Amy and I have problems every weekend. I told her that I've only had problems with her for the last 2 weekends: once when she didn't call the doctor for Jim and didn't return my phone call and then this past Sunday when the incident with her happened.

Tina said she would go check and make sure that Jim was cared for. When I came in later Jim said after 8:30 he got attention from Florence. Amy just kept her head down. I had my phone out on video mode every time I walked past her just in case she started screaming at me again.

Amy has a very loud voice and is hard to understand. Jim said that after I called Tina, Amy became very quiet.

So, I guess we have a truce. I think the home should fire her but she's still there.

Attached are photos of Jim in front of the home. He is showing off that he can hold his cup. We were sitting on the porch feeding the birds.

Sunday, March 27, 2011

March 27, 2011: Crazy Nurse Day

I put a note on Jim's door yesterday explaining his condition. Some of the staff thought Jim had been paralyzed for years. I wrote about that and about how I can't do all the physical stuff needed to take care of him.

I was hoping if the staff understood our situation they would treat us better. Today Amy, a nurse told me that I had to take it down. That it was against hippa laws. I tried to explain to her that I had Jim's permission to post it. She actually moved herself down the hall to tell the manager on duty, Nishani. Nishani came down and told me that I had to take down the sign because of hippa laws. I took it down just to make them happy. You would think they'd know that they were the ones bound by the hippa law, not the patient and his family.

I was angry with Amy. Last week she couldn't be bothered to return my phone calls or to call the doctor when Jim was peeing blood. But, she had the time to get the manager today. So, when I was going out of Jim's room, I saw her and made a comment to that effect. If I had had time to cool down, I wouldn't have bothered.

Amy got very defensive and had a gigantic fit. She told me that I was attacking her. She would not admit that she failed in her care for Jim or not calling me back. She kept yelling at me and then she went to complain to Nishani again. I was walking past them and tried to explain myself. Nishani didn't want to get into it. So then Amy called Tina, the head of nursing and told her that I was doing something illegal by posting the note. It was so stupid that I just kept on walking past.

I went back into Jim's room and fed him lunch. Jim pressed his call button at 1 PM. It rang and rang. Finally at 2:15 I went looking for Dolores, the CNA. She was down the hall and I told her that Jim's call button had been on for one hour and fifteen minutes. Dolores said that she had been at lunch. But, she only had a 30 minute lunch break. I think that Amy told her to not come in and help Jim. Dolores came in to get Jim out of bed and brought a nurse from another wing for "support." This nurse, Gertrude had no idea how to use a hoyer lift. So, I don't know why she needed her. She just kind of watched the process.

It would be nice if the "home" would tell Amy to apologize to me. But, I doubt that will happen. It's a shame. The CNA's are mostly hard working But, the nurses are substandard.

I think Jim will be sent back to TIRR again soon anyway. Hopefully, he will get well enough to come home after that.

I write about this event so I will have a record of what happened.

March 26, 2011

Jim was a lot better this morning. He wasn't swollen anymore. I don't know why he was retaining fluid yesterday. He said that he didn't eat anything salty. I told him he should drink more plain water instead of sugar free crystal light. I was going to bring him some liver from Luby's but it had closed down. I brought a double meat cheeseburger instead. He needs more red meat and protein to bring up his red blood cell count.

He felt good enough to go outside for a little while. We tried to feed the birds but they just looked at us.

We played a game in the main lounge and talked to Marty. Marty is a volunteer. His life seems to revolve around Manor Care Sharpview. He said he has volunteered there for 20 years and spends about 40 hours a week at the home. His volunteer duties seem to consist mostly of sitting around watching TV at a high volume.

Here are photos of Jim in his chair. It's fire engine red with fancy hubcaps. Jim can get so comfortable in this chair. The seat has lots of gel, has side panels for his legs and tilts way back. When he tilts the chair back and raises his legs he gets a really good weight shift. Shifting weight helps prevent bed sores.

At 5 PM Lupita drove with Mom to pick me up. The three of us went to Salt Grass Steakhouse. It's nice to do some "normal" things. I brought back prime rib for Jim.

March 25, 2011

When I arrived at the home today I found Jim laying down on the mat in the gym. He had a low grade fever and said that his whole body hurt.

His hands were swollen and wouldn't bend. He said he felt "puny." The nurse gave him some tylenol. His urinalysis and blood tests came back okay. Though, his red blood cell count was slightly below normal. I think it was because of all the blood he lost during last weekend.

He started feeling a little better and we went to the little party in the dining room. The home celebrates birthdays once a month. They served cupcakes and ice cream. There was also a couple performing. Mostly the man sung and the woman played the keyboard. We heard a lot of the same music that they played last month. The picture attached shows the dining room with the duo in the background.

The PT manager told me that Aetna wants Jim to be reevaluated by TIRR. That will probably happen next week some time. TIRR will send someone to the home to test Jim's strength. He has an appointment with Dr Wenzel on April 5th. He might possibly return to TIRR before then.

Thursday, March 24, 2011

March 24, 2011

I had to look for Jim's credit card this morning to pay the tax people. He had receipts from our last trip together in his wallet. We went to New Braunfels the weekend before his accident. It brought up the memories of Jim walking and driving, being the strong one. As a result I'm teary eyed this morning. But it's a normal sadness. I'm not having any suicidal thoughts. My medicine is working.

I saw a new therapist on Monday. She said I was coping well and doing everything that I could to help Jim and myself. I have paid up all my out-of-pocket fees so I don't have to pay a co-pay. Since it won't cost me more money I made weekly appointments with her. I need all the help that I can get.

She told me that some people's reaction to a tragedy is withdrawal. They can't cope or empathize with the other person's pain or needs. I guess that's how my Andy is reacting. When I told him to think of how he would feel if Nina got hurt, he told me that it would never happen to either of them because they take good care of themselves and are vegans. I do hope it never happens to either of them. But, it was an accident, not a result of Jim's lifestyle. My therapist, Stella is going to help me with grieving about Jim and Andy. I don't know what the future holds for either of them. Jim is getting stronger. There is still hope that he will walk again. Andy hasn't called me in a couple of months. I miss him but I'm leaving him alone. I hope he will come to terms with how things are now and be a part of my life again soon.

I know that I am so much better now. I'm eating healthier, dressing nicer and am interested in my hobbies again. I'm trying to enjoy the time that I have before Jim is sent home. It will be so difficult then.

I'm not going to visit Jim after work today. It's too hard after a full day at the office. I'm sending Lupita to massage him. The days that I go straight home after work seem like a mini vacation. It is so much work when I visit Jim. I have to keep jumping up when he needs something and help the CNA's with moving him around. At least last night he stayed in his chair longer so he fed himself, brushed his teeth and washed his hands.

March 23, 2011: Jim's new power chair

Jim's custom powered wheel chair arrived today. It was delivered by a very nice technician, Val Torres. He is the best employee of Custom Healthcare that I've dealt with. He spent a lot of time explaining and adjusting Jim's chair.

TIRR uses Custom Healthcare. I have not been pleased with the company at all, except for Val. First, they didn't keep up with getting the insurance paperwork done. I had to do the legwork after somebody finally gave me the order number at Wheelchair Professionals. I got all the paperwork done on March 3rd, got insurance approval and it was delivered 3 weeks later. The same employee(Kathy Mc)who dropped the ball on the paperwork called me on March 22 and said that I owed $1,045.00. She said it was to fulfill Jim's deductible. I told her that we don't have a deductible but I gave her my credit card number so they would deliver the chair. Kathy said she would check our insurance again and let me know. She never called me back. Today I called Aetna, who called Custom Healthcare and told them we did not owe the $1045.00. Kathy didn't call me. I called her and told her to issue my credit ASAP. I'll give her until Monday to do it and then I will have to call my credit card company to cancel the charge.

But, the good news: Jim's new chair is so much more comfortable than the loaner chair. It has a nice cushier seat, better headrest and the legs raise up for better weight shifts. It's a bright red with red "hubcaps." Custom Healthcare did get the correct chair ordered.

I don't know where I put my camera. When I find it I'll add a photo of Jim in his pimped out chair.

Monday, March 21, 2011

March 20, 2011

Saturday evening Mary and Rod came to visit. We had a good time playing "password." On Sunday Kevin and Laura came and we played "password" some more. We love having visitors!

I bought Jim some stuff at Academy - wrestling gloves, a bottle and a rear view mirror from the cycling department. The gloves are to help with grasping objects. The bottle has texture on the sides so Jim can hold it. It has an easy to open top to drink from.
These same things for these uses cost a lot more at health care websites.

The rearview mirror may not work on the wheelchair. I'll wait and see if I can attach it when Jim's own wheelchair comes in.

Being with Jim is exhausting. I can never rest. He always wants or needs something. My back was killing me. He didn't want to move around much because he was afraid of bleeding again. He didn't bleed all day Sunday.

He works very hard during PT and OT. I think he needs to work hard all the time - brushing his own teeth, feeding himself, etc. I bought the stuff from Academy to help him be more independent. I was nice to him all weekend. But now I'm going to insist he do more for himself. It's the only way that he'll improve. He says that it takes so long when he does things for himself. Too bad - he needs to learn how to do things better and quicker by practicing.

I'll be tough taskmaster today - unless he's bleeding again.

March 19, 2011: Jim needed help and didn't get it.

The doctor told Jim to expect some bleeding for a couple of days after the procedure. On Saturday morning Jim called me and was very upset. He said he was bleeding profusely. He called the nurse, Amy who looked at him for a few seconds and left. He waited for her to return. He thought maybe she had called the doctor. When he hadn't heard anything for over an hour he called me at around 10.

The urology department at TIRR was closed for the weekend. I called the fifth floor nurses' station and spoke to Kerri. I asked her to page Dr Harris. She got back on the line and said he wasn't there. She remembered Jim and asked what the problem was. I told her about the bleeding and that I had to stay home and wait for Mom's sitter to come at 11. She said I could call her back after I checked out the problem. She suggested that I call Sharpview and talk to Amy to find out more info.

I called Sharpview, the phone rang at least 20 times with no answer. I found a cell phone number on the director of admissions' card. I called her and she said she would get a hold of someone. She called me back and said a nurse would be calling me soon.

I waited and waited. Jim called me again and was very upset. At 10:45 I decided I would leave Mom alone for a short time and get to Sharpview.

When I came in there was Amy in the hallway. I said "you never called me." She said she never got the message. That was the same thing she said the day before when I tried to talk to her about the doctor's appointment. Andre, the receptionist, said he would give her my message personally.

I went into Jim's room and checked him out. The catheter line was all twisted. He said that Amy had changed it last. I called her in to tell her how to insert catheters. It turns out she only changed the bag, not the tube. I apologized to her.

Jim was still bleeding but it had slowed way down. The bleeding stopped and then started up in the afternoon. We figured out that Jim had to relax and learn how to use the new catheter.

He took a nap and I decided to go to the drugstore. As I was walking out I heard Deborah, the manager in charge that day, talk about someone calling Katie, the director.

When I returned Amy was telling the other nurses "I've never been spoken to you like that." She said "that Carpenter wife." I told her I had apologized to her about the catheter but that she had never called me back.

Kevin M came to visit Jim so I left and went to talk to Deborah. I told her it was me that called. She said she was giving a tour and someone should have answered the phone. I said I called Katie because Jim was so upset. She said she got the message from Katie and gave it to Wanda, a CNA, to give to Amy. Amy was with a patient. However, I'm 99% sure that Wanda would have given her the message. Amy just didn't bother to call me. And she lied about it.

I told Deborah that there had been 2 incidents of Amy's failure to return my calls. She said she would talk to her. She told me that Jim should ask for the manager in charge if he can't get results from the nurses.

Amy acted polite later in the day so I guess Deborah had spoken to her. She even helped me pull Jim up in bed. Nurses don't like to do that - they say it's the CNA's job.

Later we heard her taunting the patient next store, imitating his voice and calls for help. That made me disgusted with her. I figured out how to take a video with my phone. The next time I hear her I'll get it on tape. I can't believe she was acting like that and loud enough for us to hear in the next room.

Friday, March 18, 2011

March 18, 2011: Doctor's appointment

Jim had an appointment at the urology department at TIRR today. An ambulance came to pick up him at Sharpview. The nurse, Amy scheduled the pickup at 10:30. I had told her to make it 11:30. Luckily I got there before the ambulance left with Jim.

I rode with him to TIRR. Traffic was horrible around the med center. I was glad that I didn't have to drive.

We had to wait at TIRR. They didn't want to put Jim in the exam room until 12:30. I went to the TIRR cafeteria and bought Jim a turkey burger. They make great turkey burgers and have a big salad bar. I ate much healthier when Jim was in TIRR.

At 12:30 we went into the exam room. The nurses, Raj and Mary, got Jim ready for the xray. We had to wait an hour for Dr Harris to show up. They did a test- CMG cystometrogram (more info at It showed that Jim's bladder is in fine working condition. Since Jim's bladder is working, the doctor changed him to a condom catheter. It's less invasive and so a lot safer. It worked well for him all day. It's supposed to be changed daily. It's easy to do and hopefully the nurses at Sharpview won't screw it up. Raj taught me how to do it. I'll probably do most of the changing for him.

The people in the urology department were so nice and helpful. While we were there we ran into lots of people that we knew - Liza, the OT, Dr Wenzel, Lafayette. I went upstairs to say hello to our case worker, Sonia. She remembered me and was very friendly. Then I saw JR aka "super dude" down the hall. Jim named him super dude because he did a such great job taking care of him.

My mouth is still hurting. I texted the dentist, Dr Hai since he's out of town. He said I need to take amoxicillin again. I must have an infection. I hate all the side effects from antibiotics but I need to get over this infection and pain. So let the oral thrush begin, again!

Thursday, March 17, 2011

March 17, 2011: visit to Kirby Glen TIRR

I went to the TIRR outpatient clinic at Kirby Glen today during my lunch break. I wanted to see the Saebo devices in action. I was able to speak to Lisa Lewis, the head OT. She said that the saebos are individually owned by patients and they didn't have any there. She said that they try cheaper devices first, like the bioness. She showed me some helpful exercises for Jim's fingers. She says that he needs to do weight bearing exercises - like leaning on one hand on a mat and stretching to the other side.

Tomorrow I'm going to meet Jim's ambulance at TIRR for his urology tests. I hope that the tests will show that he will get bladder control again. His appointment is at 12:30. It will probably be a very long day.

I'm not going to visit Jim after work tonight. I'm getting burned out. The stress of Jim's illness and my mouth pain has gotten to me. So, tonight I will rest. Lupita will go give Jim a massage today. He loves her massages!

I feel better emotionally today. I think that maybe the medrol pills that I'm taking for my mouth pain interfered with the antidepressants. My dose of medrol decreases every day. The medrol is supposed to help with any infection that I might have. It's a steroid. It would be preferable to take antibiotics but they make me so sick. My mouth still hurts when I don't take advil.

Wednesday, March 16, 2011

March 16, 2011

I feel better today. My mouth still hurts but it's tolerable.

I got my car inspected today. Last year Jim took my car in for the inspection because my torn achilles hurt so badly. The irony is just killing me. Now I'm the able-bodied one.

You'd think I would have accepted the situation by now. I keep bouncing back into the denial phase: "how could this have happened?" I just can't believe Jim is quadriplegic and in a nursing home.

Every day I go visit him and reality slaps me in the face again. There's Jim in his wheelchair with his fingers all curled up.

Jim and I worked on taxes again. I don't know why we pay an accountant if we have to do all this work. I had to keep reading the 1040 form to Jim. He just loves that stuff and I hate it. Hopefully, we will be through with it soon.

Yesterday Dr Wenzel called to check on Jim's progress. Jim likes the therapy that he gets at Sharpview. But I think the doctors are better at TIRR. I hope he gets to return there soon for more treatment.

I know I shouldn't feel so blue now. It will all get much much worse when Jim comes back home- unless Jim gets bowel and bladder control back by then. Friday he is going back to TIRR to see a urologist. I wish he could get rid of that catheter and the ugly bag of pee that goes with it.

Guess I'm just in a crappy mood today. I don't know the point of it all. We can make it through this tragedy. Best case scenario - we survive this and grow old. We can get old and demented like the people in the nursing home. Or we get through this and something even crappier happens. I suppose "normal" people don't think this way. So, maybe I need more antidepressants. I don't feel suicidal anymore but living seems so painful and perhaps pointless.

Tuesday, March 15, 2011

March 15, 2011: OW!

The dentist decided that my pain was coming from the exposed socket where my wisdom tooth was. He shot me up with novocaine, sliced open my gum, pulled it up over the socket and sewed it in place. He said that would fix it.

After the meds wore off I was in tremendous pain. I went to see Jim anyway because we were supposed to work on the taxes. I hurt so much that instead of watching his therapy, I went to his room, took pain pills and went to sleep.

I called the dentist and he prescribed medrol dose pack. He said that I was supposed to be resting. He told me to gargle salt water and take advil.

I went home and took more meds and fell asleep on the sofa at 7 PM. I was in bed by 8:30. I slept okay.

This morning the pain is tolerable. I am at the office. I barely ate anything all day yesterday. I was afraid to chew. Now I'm hungry. Hopefully I'll be able to at least eat oatmeal.

Last night Dr Wenzel called from TIRR. She said she was checking up on Jim. I told her that he was having a urology study on Friday. I asked her about his curled up fingers. She said she might use botox on them when he returns to TIRR. Jim has an appointment with her on April 5th. I hope he will be ready to go back into TIRR at that time.

Monday, March 14, 2011

March 14, 2011

I'm going to the dentist this morning. Hopefully Dr Goodman can finally make my mouth better. I had 2 teeth extracted 2/21/11 and have been in pain ever since. Now I have dry socket where my wisdom tooth was. The pain meds make me so sleepy.

I even took a nap yesterday afternoon in Jim's room. Laura and Kevin came to visit us yesterday. They brought me sesame chicken and some eggrolls for Jim. We played password. It was a very nice visit and did a lot to relieve the boredom.

Since Jim didn't get out of bed all weekend I had to feed him every meal. At least the bleeding stopped but he was still sore. He'll be getting up today for therapy. Hopefully, the bleeding won't start up again when he moves. Last week he was doing so well. It's a shame that the nurse hurt him.

When I'm not with Jim or at work, I don't know what to with myself. My hobbies hold no interest to me now. Why bother sewing? I don't feel like shopping either. I'll have to get rid of so many things if we have to move to an apartment. Why bother buying more stuff? Our future is so uncertain.

Have to get ready now for my dentist appointment.

Saturday, March 12, 2011

March 12, 2011-boring

I called my original dentist today, Dr Goodman. My message said it's not an emergency but I still hurt after 3 weeks. He called me back and said I probably have dry socket where my wisdom tooth was. He's going to see me on Monday morning. I hope he fix it.

I was going to go to my sewing meeting this morning and experience some normality. But I forgot to email Lupita last night about when to come. So, I didn't get to leave the house until 12:30.

Jim doesn't want to get out of bed all weekend so we're stuck in his room. Last night his penis was still bleeding. He thinks he needs to rest so it will get better. It's a beautiful day and at least I can look out onto the patio from Jim's room. Sometimes cats go back there and play.

Jim is sitting in his bed going over tax papers. Even though he was only in business for 2 months and made no money there are so many tax forms to complete.

Friday, March 11, 2011

March 11, 2011: It's Friday.

I don't usually work on Fridays. But today I'm covering for my boss. She doesn't take many days off so I don't mind doing it.

Kevin called me this morning to let me know that he and Tomoko are okay. I woke up to the radio reporting an earthquake in Japan. I got up and turned on the TV. Tokyo was 240 miles from the epicenter. Kevin said the buildings all shook. Things flew out of the cabinets in his kitchen. But, even his kitty cat made it through without injury.

My tooth extraction site still hurts. The dentist said it would stop hurting after the thrush went away. I finally did get rid of the thrush in my mouth by putting nystatin ointment on my tongue. Yucky, but at least it worked. I'd call the dentist today but the office is closed on Fridays. Maybe it will stop hurting by Monday.

Jim said that he stayed in bed all day yesterday. He was trying to catch up on the sleep he missed when he had to go to the emergency room. Unfortunately, the nursing and cleaning staff kept waking him up. I hope he feels better now. I will go visit him after work today.

I am feeling much better now that I am on 3 different antidepressants. I've stopped investigating suicide methods on the internet. I knew I was sick while I was doing it. So, I found a psychiatrist who prescribed the medicine for me. I have so much to cope with it and I have to do it all by myself. I think this tragedy would be very hard on anyone. I am not ashamed of needing the medicine. I'm proud of myself for being able to find a doctor, make an appointment and get the antidepressants that I needed. I am now able to function without crying and being miserable. I have to talk to doctors, nurses, health equipment companies, etc. etc. I need my strength to deal with all of it.

Jim's attitude has been pretty upbeat through this tragedy. He works very hard on his physical and occupational therapy. He is determined to get better.

I had good news yesterday. The wheelchair company got the okay from Aetna and placed the order for Jim's chair. I think it will make him much more comfortable.

Thursday, March 10, 2011

March 10, 2011: Terrible night

Jim got started on antibiotics on Tuesday night and was feeling better. The nurse, Mullikat, came in to change out his foley catheter. I was supervising her but I don't know how to do that kind of catheter. She caused Jim a lot of pain. After I went home the CNA noticed that Jim was bleeding into the catheter tube.

Jim had the nurse call me and tell me about it. She called for an ambulance and he was taken to Memorial Hermann Southwest Hospital's emergency room. I couldn't meet him there. I had just taken a pain pill plus Mom would be alone if I left.

The ER changed his catheter. It turns out that Mullikat had inserted the foley incorrectly. The balloon was supposed to be inflated in his bladder not at the tip. He called me around 3 AM to tell me that he was back at Sharpview. MHSW told him he should see a urologist very soon.

This morning Jim had the CNA phone me. He told me that he hadn't seen Ray yet. He was very upset. I got a hold of Ray. He said that Jim didn't need to see a urologist right away. I asked him to please go reassure Jim. I spoke to Jim later and he was less anxious.

I called the urology department at TIRR and spoke to a very nice and helpful nurse, Margaret. She said the doctors weren't in today. She did move up his appointment to next Friday. I'm going to meet him there so I can learn the correct way to put in a foley catheter.

Margaret also called Ray, the physician assistant and discussed Jim's problem with him. Then she called me back. Then she spoke to Jim. A great nurse!

I have to work tomorrow so I'm not going to visit him after work today. I'm sending Lupita in to give him another massage.

Here's Jim at occupational therapy in the gym at Sharpview. He is removing objects from a pan filled with beans. He is supposed to remove one object at a time without removing any beans. He is doing very well considering that he can only use his thumb and index finger. He has a difficult time releasing the object. I'm hoping that he can get a "saebo" device that will work his fingers.

Wednesday, March 9, 2011

March 9, 2011

Here's a photo of Jim eating dinner in Sharpview's dining room. He is using a fork that has a large rubber handle. He cannot grip a regular utensil yet.

He was doing great - staying in his chair long enough to eat lunch and dinner. Monday I noticed he was having some problems. The nurse took a urine sample Monday night. Yesterday afternoon nothing had been done to help him. The nurse said they were waiting on the test results. I called Ray, the doctor's assistant. He agreed to start Jim on antibiotics since he probably has a UTI. I asked him to get Jim's catheter changed also. He has had the same tube up him for 6 weeks.

The nurse Amy called me at work yesterday. I think she asked me to make an appointment for Jim with a urologist. I made one with a doctor at TIRR. I couldn't understand what Amy was talking about. She is so hard to understand.

I also got a call from Wheelchair Professionals. Kimberly Bush told me that she didn't receive the second page of the fax I sent on Thursday. I faxed it again and she still didn't receive it. I got her email address and sent her a pdf. I hope they will actually submit it to Aetna today.

I usually work Wednesday mornings. Today I'm off since I will cover for my boss on Friday. I can go visit him early today.

Monday, March 7, 2011

March 7, 2011: lonely

I get so lonely at home without Jim. Mom is not much company. She is usually asleep when I'm home. I'll ask her what she did during the day, what she had for lunch and she doesn't remember. She is just not "present" anymore.

I have an appointment with a therapist. The earliest that I could get is March 21st. I know I need help coping with all this. She is also a social worker so she might be some help in finding resources in town.

Plus, I miss talking to Andy. Before Jim's fall, I'd talk to Andy about once a week. Now, it's nothing. My friend, Mary says that I'm being too hard on Andy. I don't think it's too much to ask for at least an occasional phone call. But, maybe it's too much for Andy. He's so happy with his girlfriend. I don't think he wants to face the reality of what is happening to Jim and me.

March 6, 2011

Here are 2 photos of Jim's newest trick. He can raise his right leg- even against gravity. See him lift his right leg while tilted on his chair. He can't do this with his feet on the floor with shoes on yet.
The other photo is Jim in a hoyer lift being put back into bed. This lift is not as good as the ones at TIRR. This one takes a lot of pushing to get the front bar down in the front. TIRR's lifts had this movement motorized. I'm not strong enough to put him into bed with Sharpview's lift. Jim is raising his right leg again in the lift. His left side is much weaker but he is working on it.

If Jim is sent home early, we'll have to get a fully automated lift so I can handle him. My orthopedist said that I shouldn't lift more than 20 pounds. I still don't have a kneecap on my left leg and this makes it very weak. So, I can't use my knees to lift.

I'm feeling much more positive about Jim's recovery. It made me so happy to see Jim lift his leg.

Sunday I washed his hair and gave him a shave. He looks great. I'll have to push the morning CNA to give him a shower. He hasn't had a shower since he's been at Sharpview. Florence, the morning CNA, prefers talking on her cell phone to doing her job. Jim can press the button for help and wait for her for over an hour. When I'm there, I walk up and down the halls looking for her. I listen for her voice since she is usually somewhere talking on her cell phone. She will lie to me about where she is, too. Nothing I hate worse than being lied to.

Yesterday I asked Florence to put Jim back into bed so I could fix his catheter and then get him back up into the chair. She looked like she was going to do it. She left the room. I thought she was coming right back. Instead the nurse, Amy came to the room and told us that Florence could not do all that in the time left on her shift. I said it was okay to just put him to bed. Thirty minutes went by - no Florence. I started searching for her. Someone told she was in the east wing. She doesn't work in the east wing. After another twenty minutes she came back into Jim's room. She told me she was helping another patient in the bathroom. I know that the first thing she did after she left the room was to go complain to the nurse. I don't what else I can do. I've complained about her to the nurse, Amy. Amy used to seem sympathetic. Now she seems annoyed with me. I am including this in my blog so if I need to complain to Tina, the head nurse, I will have a specific incident to report.

His CNA on the afternoon shift is Lolita. She does a wonderful job. I asked her if she would help me give Jim a shower. She says it's the morning shift's job. If I didn't wash Jim's hair, it would look like a big oil slick on his head.

Overall Jim is being well cared for at Sharpview. The physical therapy is great. Occupational therapy isn't going as well. OT is for above the waist, PT is for below. Jim's arms need to get stronger so eventually he will be able to use a walker. But, he still has a long way to go.

We are disappointed with Jim's fingers. The fingers are very stiff and curl up. I work on them and they get almost straight. Within minutes they curl right back. I will search for more exercises for him to work his fingers. Since the fingers have little muscles, it will take longer for them to return. They may not return to being usable, however. But, since it's only been 3 months we still have lots of hope.

Saturday, March 5, 2011

March 5, 2011: Saturday night at the home

My friend, Sara Sissenwein Norris, made this beautiful quilt for Jim. She used Jim's favorite colors - blue and purple. The quilting is done with purple thread. It really perks up Jim's room at the nursing home.

Saturdays I spend the whole day and night with Jim. Today Jim ate his lunch and dinner in the dining room. It's much nicer than staying in his room. I can't buy meals at the home on the weekends. There's no one to pay and give me a receipt. Tonight I had Jim's dessert and a banana. There's an extra bed in Jim's room that I sleep in. I put on a sleep mask and earplugs. The nurses come in and out all night long. They knock loudly and turn the big lights on. I don't think Jim has had a full night's sleep in the last 3 months that he has been hospitalized.

Jim's mother sent him a care package. He really likes the squeeze ball. It's good hand exercise for him. I've been researching tools to help him uncurl his fingers. I found "Saebo Flex" online. It looks promising. I showed it to his OT, Holly. I'm hoping she will try and get the company to send her a sample. They don't sell to individuals.

Jim did a new move today. He pulled his right knee up while in bed. He can roll himself around on the hard mat in the gym. The bed is just too soft for him to move much.

He also is lifting his feet onto the foot stands on his wheelchair. Today he stayed in his chair from noon until after dinner. It's much better for him to be sitting up than just laying in bed.

He got to visit with the old guy who is a volunteer at Sharpview. He seems to just hang around the home. Today he was playing the piano and we enjoyed listening to it. He says that he is almost 70 years old and is still working. But he's at the home just about every night and weekends.

Thursday, March 3, 2011

March 3, 2011

Yesterday I worked on getting Jim's wheelchair prescription to Aetna. The order was placed with Custom Healthcare while Jim was still at TIRR. Custom Healthcare sent the order to Wheelchair Professional because of Aetna requirements. That was on February 2, 2011.

I got a call from Aetna's case worker warning about Jim getting discharged. I told her that if she really wanted to help me she'd find out the status of Jim's wheelchair approval. She called me back and said Aetna hadn't even received it yet. That was on February 15th. I called Kathy at Custom Healthcare who said that W. Professionals was waiting on a form to be filled out by Dr Wenzel. I kept checking with Kathy. She wouldn't give me the name and number of her contact at W. Pros. Then she stopped taking my calls and answering my emails.

Yesterday I tracked down W. Pros, got Jim's case number and a copy of the necessary form. I took it over to TIRR and gave it to Stacy who's the equipment manager at TIRR.
Stacy sent me a pdf of the completed form by 5 PM yesterday afternoon.

This morning I faxed the form over to W Pros and urged them to submit the prescription.

Poor Jim has been suffering in a borrowed chair. He needs an extra padded cushion and power leg riser. He can't stay in this chair very long before he gets lots of pain.

I went to visit Jim after TIRR. I didn't get there until 4 PM and then I had to leave at 8 PM. He gets so lonesome at the nursing home.

Today I have an appointment at 5:15 with a new therapist. So, I'll be really late tonight and have even less time to be with him. She is not available on my days off.

I'm working on getting all my personal medical needs done while Jim is still in the home. I've had 2 teeth pulled, inplant put in, skin check at the dermatologist and went to my knee doctor. Friday I'm getting a mammogram.

Wednesday, March 2, 2011

March 2, 2011: It's Wednesday again.

Every Wednesday we get a scare that Aetna won't let Jim continue at Sharpview. It's very stressful.

My doctor upped my dose of wellbutrin. Without it I just cry all the time. Even with it, I cry a lot. Everything reminds of Jim and our former lives. I drive by restaurants and movie theaters that we went to together. I wonder if we'll ever go there again and what it will be like going with Jim in a wheelchair. I sit at his desk to do his paperwork. I look at his handwritten notes and I wonder if he'll ever be able to write legibly again.

I know that I shouldn't dwell on these thoughts. But, I'm finding it impossible. It's easier when I'm busy at work. It keeps my mind occupied. At night I read novels so that I can fall asleep with other thoughts in my head besides our problems.

I'm going to a dermatologist today to check me for skin cancers. It's just routine. I'm trying to get all my personal stuff taken care of before Jim is sent home. Next up- mammogram!

March 1, 2011: my teeth

I had 2 teeth pulled last week. The doctor gave me a prescription for amoxicillin. I hate antibiotics! I also had him write me scripts for diflucan and nystatin. Antibiotics always make me so sick.

The pain at the extraction site was lessening. But, then I couldn't swallow. My throat was so painful. I called the doctor and he said that it must be thrush and to discontinue the antibiotics. I've never had thrush this bad before - it's gross.

I had to go back to the dentist again today. As my thrush was clearing up the pain on the side of my tongue continued. I couldn't differentiate the pain while the thrush was in full bloom. I felt something sharp protruding from the extraction site. Turns out it was my jaw bone. Dr Hai numbed me up and sanded down my jaw bone.

I go back to him in 2 months so he can check how my implants are doing. He put bone growth material under my gum back there.

This is a pretty boring post, isn't it?