Growing Up!

I took this picture Monday after getting him into the wheelchair for school. You can see the blue sling underneath him. After seeing these pictures, it's hard to believe I used to lift him every day into the wheelchair; he seems bigger to me now. It's probably a good idea to use the Hoyer Lift however I will have to start a formal weight training program or I will lose my muscles. It was always a good feeling knowing that I could lift him quickly in case of an emergency and now that's no longer an option. I guess that's part of growing up. I couldn't get him to smile for the picture, although he smiled as soon as I was done. That's a fifteen year old for you!

Hoyer Lift Assistance Needed

I am having difficulty with Dear Son's Hoyer Lift. I have an Invacare Hoyer Lift (It's a rental and converts to a purchase once it reaches the purchase price; it did not come with an instruction manual.) and a full body sling that provide head support and does not have a commode opening. I have read the sling manual that I received with the purchase of the sling. I know the sling is the correct size because the therapists measured him and because I was able to use it properly the first time.

Problem: I am attempting to use the Hoyer Lift to get him out of his hospital bed and into the wheelchair. I can get the sling positioned properly, I can lift him with the lift however the problem arises when I release him into his wheelchair. I can't seem to get Dear Son's rear into the seat of his wheelchair. I keep falling short and Dear Son's rear end ends up on the front of the seat and I have to lift him up to position his rear end in the back part of the seat of the wheelchair. I did it successfully on Wednesday, so I know it's possible but I haven't been able to do it since.

When I attach the sling onto the Hoyer Lift, I am using the second loop (I have fabric sling hooks and not chains.) closest to his head and attaching that. I can't use the loop closet to his head because I can't seem to pull it up enough to attach it to the Hoyer Lift.

I have the Hoyer Lift positioned dead center over his waist and in the full release position when I am hooking the sling to the lift.

I am guiding him into the wheelchair however he needs be more upright in the sling so that when I lower him into the chair he is in a more upright position so I don't have to lift him. I am using the second loop on the bottom of the sling as well, because if I use one further away, I can't lift him up high enough to move him off of the bed.

If I have to lift him to get him positioned into the chair, it would be a lot less aggravation for me to just lift him into the wheelchair than to waste the time to get him into the sling, move the sling to the wheelchair and then have to lift him into the wheelchair anyway. However, I am trying to be a good patient and use this mechanical lift.

As you can see from the picture, The Hoyer Lift has tiny instructions that are attached to the round bars on the Hoyer Lift however they are in a small font and go almost all the way around the lift. The print is so small, that it didn't even show up on the picture, and I was standing pretty close to it. I can't read such tiny font and I can't read in circles since the instructions go half way around the bar. What genius thought of this?

As you may have surmised, I have no patience and no mechanical ability when it comes to these things.

I tried to search for instructions for the lift online at Invacare's website however the search tool couldn't locate them. I have a vendor coming on Monday however unfortunately, Dear Son needs to get out of bed prior to Monday evening.

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.

Thanks.

Update

It was a very long day in the Emergency Room at Big Academic Medical Center. We arrived at 1 p.m. and were discharged at 8:30 p.m. Dear Son had a chest x-ray and blood work done. The chest x-ray showed no evidence of pneumonia and the CBC was normal. They diagnosed him with an upper respiratory infection and bronchitis. He was given an breathing treatment while we were there and that helped as well. Since we were having blood drawn, I had them draw the seizure labs as well to save us a future visit.

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.

Dear Son's Sick

Dear Son came home from the Respite House Tuesday night and was coughing all night and very congested. Yesterday, school called and said he was running a temperature of 100.7 and that he couldn't return to school until he was temperature free for twenty four hours. Apparently, most of the kids in his classroom have a cold that appears to be going around although none of them were febrile. Once he came home, I treated his fever with Motrin every four hours however his temperature has continue to rise and is now 102.8. His breathing was very labored all night and with his history of aspiration pneumonia, I called the nurse. Since he's had a temperature for over twenty four hours and with his history of aspiration pneumonia, I need to bring him in to the Emergency Room at Big Academic Medical Center for a chest x-ray and some blood work. As his temperature increases, his breathing will become more labored and we'll be at risk for more seizures.

I'll update you when I can.

Dear Son Comes Home!

It's hard to believe that time has passed so quickly! On the evening of August 29th, we dropped Dear Son off at the Respite House so I could have surgery the following day. On August 30th, I had a Lumbar Microendoscopic Discectomy (also known as a Lumbar Laminectomy) on L3-L4 and L4-L5. It went fine. In my follow up appointment, the neurosurgeon said that it was really two surgeries since they operated at two levels of the spine versus just one. He said he did that otherwise I would be looking at a spinal fusion in less than one year. I am so relieved to have this behind me.

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.

If You Can't Trust Your Momma....

We had many conversations, Dear Son and I, usually when he came home from the hospital. I would always tell him, when he’d by lying in his bed, that I would always take care of him, that I would always be there. We had a phrase, Dear Son and I, “where he went, his Momma went.” That’s what I would always tell him. Whenever I said this to him, he would give me a great big smile. I’d look him in the eye and then give him a bunch of hugs and kisses. As the years went on, I continued our little conversation. It didn’t really matter how old he got, I still stayed at the hospital, through all of his hospitalizations. I did leave for work, since I worked part time, but I was never gone for very long, always after his breakfast and back before dinner. There was always too much that could go wrong, I figured, and it was always easier for me to stay than it was to go.

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.

*This is a picture I took yesterday at the Respite House while visiting with Dear Son. If you look closely, you can see the deer at the end of yard. Apparently, there is a family of five that comes to eat the flowers every morning.

Dear Son's Gone to the Dogs!

O.K. Well, not exactly. The Pet Therapy dog came to the Respite House to see the kids yesterday. These pictures arrived in my in-box this morning with the following message from one of his nurses,

"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."

This was great to hear. I was in a fair amount of pain yesterday and had great difficulty walking so I was not able to see Dear Son. I was missing him terribly and finally called him around dinner time and asked to speak to him. I was crying I missed him so much. It is really hard not being around him or be able to care for him in any way. Luckily, I got a ride to see him today and surprised him after school. He seemed happy to see me and teased me today by kissing his Barney but refused to give me any kisses. I'll be glad when I am better and able to take him home. Here's a picture I took today when we were rocking together after school at the Respite House.

The Respite House

It was a long day Saturday without seeing Dear Son. I have to admit I was a bit depressed even though I did get to speak with him. Yesterday, I called to talk to him and he was getting a bath so they had to return my call. Imagine my surprise when one of the nurses offered to pick me up so I could see Dear Son (I only live three blocks from the Respite House.). I left around 12:30 p.m. and returned around 5 p.m. They didn't tell him I was coming so he was surprised to see me. He was watching t.v. in the family room of the Respite House when I got there. (See the pictures above.) Dear Son has the green shirt on. I was thrilled to see him!

Yesterday was a very special day at the Respite House since they were dedicating a new "Serenity Garden." The Serenity Garden was built on the south end of the property as a way to honor those children who have since passed; these children stayed at the Respite House for visits at one time or another. The pastor (in white) dedicated the Garden and then one person from each of the families came up to talk about what their child who had passed meant to them and how they affected their lives. It was very touching. Near the end of the ceremony, the local fire department played Amazing Grace. It was quite beautiful and touching especially since this is the department that has showed up many times for Dear Son when I have called 911.

Bright ribbons hung from the trees and after all of the dedications were complete, they had each of the familes tie a bell on the ribbon in memory of that child. It was a beautiful day for the dedication. I couldn't help but be touched by so many of the beautiful stories. At the same time, I felt lucky to be there with my own Dear Son knowing that one day, I will pass over that imaginary line and join them.

One particular man touched me with his stories of his son. He talked about how he felt he was chosen to take care of him. He said he felt he was chosen by God because he knew that he would take the best possible care of that little boy. I thought that was a beautiful way to look at life.

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.

All in all, a beautiful day for a dedication. I was happy to be part of it. When the dedication was over, we spent some time in the backyard of the Respite House. Here's a partial view of the backyard, which faces East. You can see the playground and the swing with the ramp for the wheelchair on the left.

Here's Dear Son listening to some country music.

Finally, they took Dear Son into his bedroom to be changed and I sat with him for a while until they took me home. This is the view from his bedroom window.

Regarding the Respite House, they have a large group of volunteers that take care of the garden and do various chores for the home. They also have a lot of high school students that come here and play with the kids, everything from games to taking them outside. The Respite House provides twenty four hour a day nursing care and has a physician that stops by twice a week. If I recall, the property is located on three acres.

The Respite House, as I refer to it for this blog, actually performs both Respite and After Hospital stays for children with Special Needs. The vast majority of children who stay here are on Medicaid; Dear Son is not, however our stay was funded primarily through local donations and in part by a donation from the Department of Human Services since neither one of his insurance plans has any nursing coverage or respite care. The cost of Dear Son's 14 day stay is over $7,300. This house is unique to our area and is greatly needed in many areas of our country. We have no places for Special Needs children to stay when their parents need a break or when they need surgery, like I do. Parents of normal children have daycare, we have none.

I am doing o.k. after surgery. I probably did too much yesterday. I was in a lot of pain last night and this morning. I am having some trouble walking. I had hoped I would be recovering much faster. I can't wait to have Dear Son home again. It's very lonely without him and I am having a hard time sleeping at night without him here.

On the plus side, he is having fun. It was also nice yesterday since they could get his dinner and meds ready and I could go home. I was very tired and it was a nice feeling knowing that they would do it and it would be fine.

Spine Surgery Update II

Yesterday was quite painful. Dear Son's Dad got my prescription for some pain relief filled last night for me. He has been so helpful with this surgery. I had been taking the Extra Strength Tylenol but it wasn't helping much. Prior to filling it, we stopped in at the Respite House and saw Dear Son. He was sooooo happy to see his Mom and Dad.

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.