Wednesday, September 19, 2007
Saturday, September 15, 2007
Problem #2: I can't seem to get this legs of the Hoyer Lift to remain spread while I move/transport him. I can lock the legs in the full spread position however then the lift won't go through the three foot wide doorway. If I unlock the legs, then the legs move toward the center (you have to have the legs spread to support the weight of the patient). Does anyone have any ideas on how I can lock the legs when they spread less the full open position? I need to be able to transport him with the legs spread about 70% to fit through the doorway and I need it to lock in place. Here's a picture of the base. In the lift I used at the Respite House, it five slots in the bottom that you could hook the metal post in to lock it in place.
Yes, technically, I know you aren't supposed to transport him however I don't have much space in his bedroom so I am transporting him from his bed to the wheelchair in the dining room, which is about ten feet away. I have been assured this is o.k. from one of the nurses who came to my apartment. She checked the base and wasn't sure how this particular one worked and she uses Hoyer Lifts every day.
Thursday, September 13, 2007
All in all, a very long day. My back was getting pretty sore after sitting for such a long time. Hopefully, I can sleep tonight as I was up most of last night with Dear Son. I need to get some rest since I will be going to a party tomorrow night with some people that I haven't seen in a long time. It should be great fun and a nice way to end a busy week.
I'll update you when I can.
Tuesday, September 11, 2007
We picked Dear Son up at the Respite House after school today and I brought him home. That was a long time to leave him there! He was all smiles from the time we walked into the house until he came home. I was so proud of him for helping me out and staying there so long.
As for the spine surgery, I have been recovering fairly well. I am amazed that I can have back surgery and be walking so soon. I am walking fine (O.K. maybe a little trouble now and then.) and the surgery has eliminated all of my leg pain. I can sleep in my bed and roll over easily. Prior to the surgery, I had such leg (and back) pain, that I had to sleep some or all of the night in a chair in my living room. I was unable to roll over at all due to the pain. I had some numbness in my right thigh for about a week after the surgery but that has gone away.
Although I am not supposed to drive for four weeks, I started driving to see Dear Son about a week after surgery (it was only three blocks away) and I am doing fine. I am self employed and work part time so I returned to work this week and will work three days. That seems to be o.k. but I do seem to have a little back pain towards the end of the day. I would have preferred to take more time off but I need to work to keep the income.
I still have some back pain however I am hopeful that will go away soon. There are still a few things I can't do very well and all of them involve bending over. I can't seem to bend over at all without any pain. That means, things like washing my hands, I need to wash them one at a time or taking out my contact lenses and leaning over a bit is quite painful. I can't stand and blow dry my hair just yet (I have to sit down.) and I've had to elevate the pet dishes since I can't bend over and get them off the floor. My cat has adjusted nicely to the transition.
Regarding caring for Dear Son, I am able to push the wheelchair easily. I also learned how to use the Hoyer Lift and with his new hospital bed, I am able to get the Hoyer Lift under the bed. I tried it once today and hope I can do it by myself in the morning when I get him ready for school.
The things I thought would be easy are the hardest. It is very painful to lean over and give his medications and excruciating to lean over to change him. I think putting his shoes and socks on and securing his foot straps on the wheelchair may be challenging as well. I wish I had some nursing care available to help me for another week but I don't have any coverage on either insurance plan for him. The good news is that he is in school 1/2 day tomorrow and all day Thursday and Friday then his Dad will take him for the weekend and I'll have another break. I think I just need a little more time to heal since it's only been 12 days.
I am so excited that he's finally home. It didn't feel much like a home when he wasn't here. Every time the cat did something that I knew he'd like, I'd imagine him laughing. I sure missed that. I missed getting up every day and seeing his beautiful smile. On the other hand, one of the CNAs told me that one of the things she loved the most about him was that he was so happy and that he got up every day with a smile on his face. It was nice they got to see that. It was also not much fun doing things around the house. I love making our house a home because he's in it. I enjoy taking care of him and it gives me a sense of purpose. Granted, if he wasn't here, I would be working full time and could build a different life but I think I would feel that something was missing.
All in all, it's great to have him home. I couldn't ask for more.
Friday, September 07, 2007
I loved being there for Dear Son. It never really mattered to me, what he did. It didn’t matter if he slept all day or was up all night. As long as I was in the same room as him, I was happy.
When he’d spend the night at his Dad’s, we had our little ritual when he came home. I’d always tell him, as I tucked him in that night, that I was glad he was home. I’d tease him that I did enjoy getting to sleep the whole night, without getting up, but that I really missed him and that it wasn’t the same when he’s not there. They were not just words, it was true. I always felt that something was desperately missing when Dear Son wasn’t there.
It’s different when your children have special needs. Most people can easily understand that you can’t leave a baby alone, since they need your help, but I don’t think most people can really grasp what it’s like to have a special needs child. It’s especially challenging when they can’t talk, walk, feed themselves or go to the washroom. They are forever dependent on someone to figure out just what it is that they need, when they need it and how it should be done. A very tall order for most people.
But it’s the trust factor that’s really the key. They learn to rely on you for everything they need. So when I had to get ready for this surgery, it was the most difficult thing I ever faced in my life.
I can’t remember ever being so nervous about anything in my life. My back has always been a train wreck of sorts, so any little thing that stirs the pot, usually hurts a whole lot. On top of that, I’d have to relinquish control of all of Dear Son’s needs to someone else. Heck, I never let anyone else (other than his Dad) ever give any of his meds, other than the lunch time ones, since I simply did not want to make any mistakes. But it went beyond that, Dear Son trusted me, and wherever he went, I went. Except for this time.
I tried to explain to him, that I needed to go into the hospital to get my back fixed. I said my back didn’t work very well, like his legs didn’t work very well. It wasn’t because of him or anything he did, it’s just that I needed to get it fixed so I could continue taking care of him. I talked to him several times about it but I don’t think he ever really understood it until we dropped him off. It was hard too because I couldn’t make any promises to him as to when I’d see him, because, well, I just didn’t know. But the bigger issue was the fact that, for the first time, I really wasn’t in control of the situation. What if something went wrong and he couldn’t come back. What if, I could no longer take care of him? Who would? What would happen to my Dear Son?
In addition to that, there would be the loneliness. Not only would I be lonely but I would be worried about him. I would be worried he wouldn’t think I was coming back. The one thing I didn’t have to worry about were the people taking care of him. I trusted that they would take good care of him and they did.
I had my surgery on last Thursday and as we drove home Thursday evening, I called Dear Son at around 6 p.m. to see how he was doing. They had a few questions, which was normal, but there wasn’t much I could do. I came home Friday morning and was on my own ever since. By Friday night, I was missing him terribly and convinced his Dad to take me to the Respite House to see him, while he filled my prescriptions. I visited with him then and then I wouldn’t see him again until Sunday. Dear Son refused to kiss me and I knew it was because he thought I broke our “little agreement.” It wasn’t really a little agreement, trust is a big thing; when you look someone in the eye, it means something and I meant every word to my Dear Son.
I spent all day Sunday with Dear Son. I didn’t care what we did, I just wanted to hold his hand and tell him I loved him. He didn’t want to hold my hand as much, and kept pulling away. I knew what that meant and I felt bad. He thought I had broken our agreement. On Monday, I was so exhausted, I just crashed all day and then got up depressed because I missed him so much. I ended up calling him that evening and cried when I couldn’t be there. On Tuesday, I got to see him again and yesterday I drove there for the first time. I plan on seeing him again today. I am driving there now, although I am not supposed to. I can’t bear to leave him and can’t wait until he can come home.
Yesterday, I had a conversation with the Director of Nursing about Dear Son. I explained to her that he wouldn’t give me kisses the first few days. She said that a lot of the kids do different things when they are away from their parents. Some won’t look at them and then again some parents don’t visit them. I can’t imagine what it must be like for these kids to be away from home and wonder when their parents are coming. They must feel like they were abandoned.
I am thrilled that I had such a nice place for Dear Son to stay and I’ll be even happier when he’s home. When he comes home, I’ll reassure him again that I’ll never leave him, but I’ll also add something to it in case I have to go to the hospital again. I don’t ever want Dear Son not to trust me. After all, if you can’t trust your Momma, who can you trust?
Things are looking better now. I am feeling better and I am hopeful I will be able to care for him in a few days. I can’t wait for him to come home. I pray every night for a good recovery and am waiting for him to sleep in his own bed again. In the meantime, I’ll look him in the eye and tell him that he’ll be coming home soon. And I’ll mean it.
Tuesday, September 04, 2007
"Here are some pictures of Dear Son enjoying an hour with Cody, our Pet Therapy dog. Cody seemed to gravitate toward Dear Son and spend the most time with him. Dear Son got a little excited at first and then they became fast friends. I couldn't believe how calm Dear Son became and just sat back and enjoyed the kisses from Cody and enjoyed petting Cody."
Monday, September 03, 2007
Another man had adopted a special needs child. He spoke of how much work it took to get the child off to school or to go anywhere. He said he used to play music every morning while he got the child ready for school and on one particular song, it would get really loud toward the end and make him laugh so he would often comment on it. Soon the child would smile in anticipation of the ending. He said he knew then that something was going on in his brain and he built on that. That was exactly the feeling I had when I read, "The Foot Book" to Dear Son when he was little. I used to read it in a sing song voice and touch his feet at one particular time. When he reacted in anticipation of that, I knew something was going on and I built on that trying to get Dear Son into our world more and more.
Saturday, September 01, 2007
It was interesting when we were there. I started talking to Dear Son and told bim that as soon as I could walk better, he could come home. I said that I was recovering from back surgery at the hospital and that it was nice because he didn't need to have surgery or anything done. He could just relax and play since they weren't going to do anything to him. He started really laughing which is his way to let me know that I hit upon what was worrying him. Once I realized that he may have thought he was having something done with all the nurses around, I re-emphasized that he was going to be fine and this was just a "Play House" for him until I got better. He laughed some more. I felt bad that I didn't think of this before. Here he was worried they were going to do something to him medically! I gave him a bunch of hugs and kisses and last night he kissed me a few times and then played his Bedtime Barney song of "I Love You." We call that our song and he is able to hit the button with his nose and bypasses over the other five songs until he gets that one. That's his way of saying, "I love you." All in all, it was a wonderful visit. He looks so happy and right at home there. I'll try to take some pictures of the Respite House next time. It's the perfect place for these kids.
The nurses have been fantastic there. Dear Son is spending plenty of time in this big rocking chair that they have for him. They have volunteers that is spending some time with him as well. I called Dear Son at school yesterday and then after school at the Respite House and he was busy looking out the window in his rocker with a nurse on either side of him rocking some babies. He sure loved that!
The new pain pills seemed to help. I took them at 9 p.m. since I was exhausted after seeing Dear Son. I hadn't been able to lie down much since the surgery because it was pretty painful in that position. However last night I was able to lie down in bed and sleep for six hours without having to get up and sit up in a chair because my leg pain was so bad. My leg pain is gone so that's wonderful. Now I just have to heal from the surgery.
It should start getting a little easier for me after today. One of the nurses told me the second and third days are the worse. I feel better already without the leg pain and better knowing that Dear Son is well cared for and very happy. I can't wait until he can come home. I am feeling very blessed that I have such wonderful help at this time; everything from the nurses caring for Dear Son, from his Dad for helping me, and for all of the well wishes and comments from friends, bloggers and family. I couldn't ask for more.
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