Spine Surgery

It's been a long week. Over the past year, I have had many back issues that have caused me a lot of pain. I have had back issues since I was a child, wearing a brace for a few years and have had multiple issues since then. My back has always been a train wreck of sorts, and I've needed surgery for spinal stenosis, one of the my larger back issues, since my early twenties. I have been seeing a neurosurgeon since May of last year and been to the pain clinic where I had a few facet joint injections to manage the pain. I have been unable to exercise for more than year and was in a fair amount of pain and gained some weight.

In May of this year, things drastically changed and I was in severe pain, unable to walk, stand for any length of time or lie down. It took several weeks and I was finally able to lie down. Last month I saw the neurosurgeon and we agreed it was time to do spine surgery. The plan was that he'd address the most pressing issue, the spinal stenosis via an endoscopic lumbar laminectomy to relieve my leg pain and relieve some of the neural impairment. Since I hadn't had an MRI in a year, he ordered a new MRI and x-rays. The surgery is scheduled for August 30th.

I had an MRI this week and in addition to the spinal stenosis (I also have a host of other issues) they found three extremely large herniated discs which helped explain my severe pain. A further consultation with the neurosurgeon indicated that he will do the lumbar laminectomy as originally planned and fix the worst herniations since this will be the least invasive surgery and will give me the fastest recovery.

I'll have surgery at the end of next month and I have a person at Big Academic Medical Center that is coordinating a stay for Dear Son at a local facility that does Respite and After Hospital care for Special Needs children. He will be there two to three weeks since I won't be able to lift him for a while. They are still in the process of completing the required paperwork for the admission. At issue, was his insurance coverage as neither of Dear Son's insurance plans have provisions for Respite Care or Private Duty Nursing.

As you might imagine, it is very difficult for me to leave Dear Son anywhere. I am actually more concerned about leaving him than my own surgery. In all of the years he has been hospitalized, I have never left him for even one day. I have worked during his admissions but left only for a few hours and they've had a sitter during that time.

On the plus side, this place should be a lot of fun for him. It is situated on three acres, has an awesome outdoor play area including a wheelchair swing (they place the wheelchair on a glider, lock it in place and then swing) plus plenty of toys inside and a giant rocker similar to the one he loves at home. I can also schedule play dates with the volunteers for him. I think he will have a great time plus it's less than five minutes from my home. I have the added advantage that a few of the employees are clients of mine and know Dear Son well. In addition, one of his former physicians, a physiatrist (she specializes in physical medicine and rehabilitation), is also the Medical Director there and visits once or twice a week. She has known Dear Son since he was three years old. We had also attended the Christmas party for the kids which Dear Son enjoyed immensely.

The surgery coincides with the first days of school so there is a lot to coordinate since the bus will need to pick him up from there. In the meantime, I have ordered a new sling for his Hoyer Lift; the prior one was too small and made using it unsafe.

I am somewhat relieved about the surgery since the success rate is pretty good but a little nervous about being able to really leave Dear Son. I have had a few conversations with him already, explaining that I have a bad back, will need some surgery in the hospital and that I'll need some help to care for him until I can do this. He seems o.k with it. I'll take him to the facility to check it out as soon as they confirm the dates and get the confirmations. Dear Son is very outgoing and has a great personality. He'll probably love having the other kids around plus the rocker and the swing.

Summer

Today is the last day of summer school. Dear Son and I waited for the bus, as we normally do. We’d go out to wait for the bus early, early enough to transition him to the large adult white rocker, the one that used to be too tall for him to use, his feet sitting squarely on the ground, as he rocks the morning away listening to all of the birdies singing songs to him. He’d rock for about fifteen minutes or so until I’d transition him back to the wheelchair so he could go to school.

Summer school, is a bit different for these kids. The plan, is that it is supposed to help them maintain their skills, the ones they have worked on all year, with the addition of a few weeks over the summer. The summer school program in this area is quite nice. It is run by the Special Education Cooperative in association with another group, a Special Education Park District, of sorts. This means the summer is filled with a field trip every Monday, swimming Tuesday through Friday, summer concerts and a host of fun activities dictated by the theme for the summer. This year's theme was "Summer Celebration." I really love the fact that they do all of these activities, activities that are often too hard or too tiring to do by myself now that he is all grown up. It takes a lot of work to do any one of these activities, let alone so many and yet Dear Son enjoys them immensely. It also gives him a chance at a normal life, one filled with fun things to look forward to instead of sitting in a rocker staring outside all day, watching the able bodied kids run around and play. Instead of watching the action, he's a part of the action. Big difference.

He’s had a great summer thanks to his two adult males aides, Brett and Jamie. They helped him have fun in the pool this summer, took him to the park, took him to the concerts at school and in general worked with him one on one all summer long.

This is great for Dear Son who thoroughly enjoys all of the summer fun. Just last week, they had a summer concert and I got the newsletter that Dear Son enjoyed the country music, his favorite. He was yelling and carrying on and smiling the entire time. They also mentioned that he had a great dance partner, Beth, from the transition house. If there is anyone who loves a party, it would be Dear Son. These activities allow him to enjoy life similar to the way I enjoyed summer as a kid, only he needs a little more assistance. While I spent every summer playing Sugar League 16 inch Softball, he spends the summer swimming at the pool.

But there are some things that don’t seem to change over time or so we’d like to think. As I got Dear Son on the bus today, I said to the bus driver, a good looking man in his early fifties,that today was the last day of school. Without missing a beat, he turned to Dear Son and said, “Ah, Dear Son. Today is the last day to get the girls phone numbers before summer.” With that, we both had a good laugh. And with that, it brought summer all the way back.

Mixed Bag

Sorry for the delay in posting; it’s been a busy summer. Summer is always challenging as a single parent of a special needs child because Dear Son is only in summer school in the mornings and eventually out of school after a few weeks; this means I am caregiving most of the day or nearly all of the day. At this stage, it’s physically demanding and tough to run many errands since it’s too hard to take him along.

Summer school started last month and I spent the first few weeks attempting to get an aide for the school bus. There are seven special needs teenagers on the bus with one bus driver and no aide. I did not feel that was safe. I said that it didn’t make sense that Dear Son had a Medical Assistant at school and no aide on the bus for summer school. They agreed. In addition, I had some concerns since it was so hot on the school bus-they don’t have air conditioning and Dear Son’s had pneumonia so it may be harder on him since his lungs are weaker. (During the school year, Dear Son goes out of district to a different high school There is a special education co-operative that handles the special needs kids. For summer school, there is a joint venture between a special education park district type group and the school district. Essentially, the kids swim four times a week and then do a lot of fun activities throughout summer school, like school concerts, picnics in the park, etc. Dear Son loves it.)

I had several conversations regarding obtaining this aide for the school bus and around the first of July I was told it was approved. The aide was supposed to start asap. When the aide didn’t start, I questioned it again and there was discussion with the school district as to whether or not an aide was indicated in Dear Son’s IEP. (He did have an aide on the school bus during the regular school year.) I did not see it indicated in there so we do not have an aide. I had follow up conversations and they agreed yesterday that they could switch him to another bus for the remainder of the school year however summer school ends on Tuesday and I decided to let him remain on the current bus since I was comfortable with the bus driver and I didn’t want to make changes at the last minute.

Next, Dear Son had been having more seizures since he was released from the hospital last month. They started almost a week later and seem to go in groups. He might have a lot for a few days and then o.k for a few days. The Vagus Nerve Stimulator works well however I had a few times where it didn’t stop the seizures. I had seizure levels drawn and will follow up with the neurologist this week.

In the last week, he began having some issues with his right hand and arm. Dear Son has no functional use of his hands or arms (He has an apraxia. Also, there is a movement disorder that is the result of the ARX gene defect.) I wasn’t sure what was wrong only that I didn’t feel things were quite right. His right hand was swelling quite a bit and was losing color. I became concerned because the swelling was not symmetrical with his other hand and because his hand was hanging down at such an odd position it was practically getting caught when he got on and off the bus making it more challenging. His issues with the hand started last Monday.

On Wednesday of last week, the school contacted me and said Dear Son would be late. There was a bus accident and Dear Son was not injured but he would be late. Apparently, his bus was stationary and another special education school bus attempted to pass their bus in the parking lot at the pool and had the ramp still in the out position. (There are a lot of special education busses at the pool, maybe fifty or so, making it very congested.) It sheared off four windows breaking all of them and damaging the bus pretty well, with Dear Son inside. Luckily he wasn’t hurt. I can’t imagine if he would have been sitting back further (he sits behind the bus driver) since he would have been hit in the head and not been able to move or help himself. Since the bus was damaged, they had to wait for a replacement. Dear Son is the first pick up and the last one dropped off so he is on the bus longer than any other student, for around 45 minutes. This was problematic since he needs his medicine at lunchtime and when the bus is late, he’d miss his medication. They made provisions and had a co-op bus drop him off so he could get his meds.

The bus accident was a good example of why there needs to be an aide on the bus. If it were a more serious accident, there is no way one bus driver could attend to seven special needs children, or even get them off the bus. This is a huge liability issue. It’s also difficult for the bus driver to drive and to attend to these kids, especially if any of them have an issue.

On that day, I spoke with the school nurse and requested she check out his hand to see what was wrong. She said she’d check it out and get back to me. She called me two days later and said that she was very concerned because his hand was swollen and contracted at a 90 degree angle and cutting off his circulation. She called me on Friday evening and thought he needed a brace for his hand and should be seen.

I contacted the Pediatric Orthopedic Surgeon on call at Big Academic Medical Center on Saturday morning and eventually took him to the ER. By that time, they thought his hand was fine and the swelling had gone down. They did x rays and released him. I am not certain I am entirely comfortable with that decision so I will do some more appropriate follow up.

In the interim, I contacted a worker for Respite however she isn’t able to start until this week. She has worked for me before however the challenge this summer will be to determine if she can get Dear Son out of the wheelchair when he gets home from school and lie him down so he can get his feeding. We’ll see if it’s doable. It’s extremely difficult finding any help at this stage since he’s so heavy and most men and women can not lift him. He has two male aides at school at find moving him difficult. This girl has an older brother that was bowel/bladder and brain injured in a car accident and has been helping care for him for several years. Her brother is 275 pounds and is now somewhat ambulatory. She is the niece of our normal Respite worker and we’ve had her before. Since we have no nursing coverage on either of Dear Son’s insurance plans, it’s challenging.

In addition, I have been having a lot of issues with my back. I have had issues all of my life however they have come to a head and I am unable to stand for more than a few minutes and can’t walk very far. I am having some back surgery at the end of the next month to fix that.

Summer can be challenging for parents of special needs children. I have said multiple times that we need to have affordable daycare for all children in this country, especially special needs. It is very difficult to work, even part time, when he goes to school from 8 to 12 p.m. for five weeks in the summer and then he’s off for a month until school starts. It’s a lot of care in addition to the difficulty in finding any workers and paying for them on a part time employment which is a mere fraction of what I could make if I worked full time (I make 95% less than when I worked full time.) I don’t know many single mothers who could work without any access to daycare and yet we expect mothers of special needs children to work without any access to daycare of any kind or nursing care of any kind.

During this time, I also had been working a part time job and had taken the month of June off since I didn’t have a sitter. When I returned, I had to quit that job since they had a new requirement of availability which included x number of days and weekends and I can not meet that schedule with Dear Son. Without daycare for special needs, it’s difficult to meet the needs of most employers.

Fortunately, I have started my own business and can set my own hours. It’s still a challenge and there are more expenses and work with it but it should be a little easier. I am fortunate that Dear Son’s father has been able to help me and has been babysitting so I can work a few days. He's also helping me with all doctor appointments, ER visits and anything else. I couldn't do it without his help.

I am a bit behind on setting up medical appointments for him. I need to follow up with the ENT regarding the botox injections since I haven’t heard from them. I need to make an appointment with GI, a dental appointment, appointment with the wheelchair vendor for wheelchair repairs and to get a new sling for the Hoyer Lift. I have an appointment for him next month with ophthalmology to look at his eyes since he is having some issues with strabismus. He had surgery eleven years ago to fix this but only had surgery in one eye with the plan that if he had issues with the other eye, we’d follow up. He’s had regular eye exams however his one eye seems to be getting worse.

Overall, just a normal summer for us. Summers are challenging for all parents of special needs children and this summer isn’t any different.

I hope to get back to blogging again later this week or early next week.

Thank you for your patience and concern for Dear Son.

Love, Change and Gracious Living

Dreaming Again posted a comment on my last post about a recent decision to send her husband home with lots of new equipment. One of the items she mentioned that they were discussing was a twin air mattress or twin bed for the home. The problem, is that she is a married woman and although clinically it might be the right decision, she indicates that she isn’t certain what will happen to their queen bed if they get the new twin hospital bed let alone the fact that they enjoy sleeping together.

This is one problem that sometimes comes up in caring for individuals with disabilities or chronic illness…what will life be like when you get home and how do you manage the changes to your normal existance.

It’s been around a year ago that Dear Son was switched to g tube feedings and it was probably one of the most difficult transitions I’ve ever had to make. Although I didn’t doubt that it was the right one from a clinical perspective, it was extremely difficult because it changed our family life, forever. Gone were the days of making home cooked meals for Dear Son, ones he really enjoyed. He was the kind of kid who loved my home cooking and refused all offers of food at school and in the community setting, including any kind of treat. It became a joke at the Individual Education Plan (IEP) meetings when they discussed his development, that he refused all other offers of food. It was something that made me proud because it was our home life that he loved.

I felt good too because I knew when he was hungry. Since he couldn't speak, it was great that he could communicate this to me. He’d made these clicking noises as I called them, with his tongue, to indicate when he was hungry and then I'd feed him. Although we ate at regular times, there would be a few occasions where he'd be hungry earlier, like anyone else. A few years back, when he could walk on his knees, he’d sometimes walk into the kitchen and click, to let me know he was ready to eat. Or sometimes, when I was feeding him, it would be more dramatic and he would take his face and smash it into his food, indicating to me to hurry up and serve him faster. He didn’t like it if I took too long to give him his food. It was always a balancing act, trying to figure out how to serve his meals so we could all eat together or after I divorced, for Dear Son and I to eat together as opposed to serving him separately and then eating my own meal after that. I settled on cooking one meal, we both could eat, his finely chopped and mixed in mashed potatoes usually, and mine normal, but we’d eat at the same table with me serving him his food and then grabbing a bite in between while he processed his food. I say processed, because he didn’t chew that well and preferred to taste and swallow.

So the problem came when we came home from the hospital last year and I could no longer cook a home cooked meal, with the house smelling of the food, without feeling guilty. We had a little ritual all the time, that any time he got out of the hospital, I’d good his favorite meal when we got home. That ritual had to be broken immediately. From that point on, I didn’t like eating in the same room or eating whenever he could see me. It just seemed too mean. I mean, how could I eat a nice hot home cooked meal, one that he loved, and not give him any, even if I knew it was the right thing to do? Easier said than done. So I’d eat after he went to bed or after he’d fall asleep, but never while he was in the same room.

The holidays were particularly bad, because he was home from school all day. It was really hard not to break up a long day by making a nice meal. I decided to feed him a meal on the holidays, even though he wasn’t supposed to eat anything by mouth, because well, I just couldn’t cook a Thanksgiving dinner or take him to a relative’s house and have him sit in another room while everyone sat around the table and talked and ate, with him excluded. It was as much about the social aspect as it was about the food. I remember last Thanksgiving, when I fed him, he’d got really excited, his eyes got real big and he’d smile. I’d feed him very, very carefully so he wouldn’t choke. Tiny amounts, finely chopped, almost pureed. The whole meal took so long, I’d have to head it up in between, but it felt really good. Both for him and for me. I did this at Christmas too.

Winter came, and some days were just downright cold. It didn’t feel good to send him to school with PediaSure in his belly, without a hot meal. In the old days, he’d have hot cereal for breakfast. Or when he’d come home from school, I’d make him a hot dinner. Those days were over.

And then there was my eating. Gone were the healthy home cooked meals, since I didn’t feel good about cooking. I tried different times to get into the habit again, but it never felt good. I tried starting a new ritual, of eating by candlelight to make it more enticing, but eating while Dear Son lie in the other room didn’t feel right either.

Over time, it got easier. His swallowing had deteriorated so much that he didn’t want to eat much anymore. At the last IEP in May, I asked questions about lunchtime. The school nurse used to feed him for many years. I asked if it seemed like Dear Son missed food when he sat in the cafeteria with the other students. She said no, he was too busy looking at the other girls. She said she totally understood my concern, because Dear Son loved my cooking but that she felt he was o.k. with eating via the tube now. It made me feel better.

It was around that time, that I finally started cooking again. I make meals in my kitchen and am eating much healthier. I don’t feel as bad as I used to. I was reflecting recently on just what made it so difficult to make the transition. I think it was because when he eats via the tube, I have no way to know when he’s hungry or when he’s full. When he could eat by mouth, I always knew when he was hungry and he’d always stop when he was full. I had done that his entire life, stopping when he didn’t want anymore. With the PediaSure, I have no way to know when it’s enough or when he’s hungry. That bothers me. I also felt a little guilty. Although I know in my head that he needs to eat via the tube, it’s also easier so sometimes I think am I doing this because it’s easier and then my brain switches back and I remember that I am feeding him via the tube because I have to, not otherwise. I think in the end, it really boiled down to my feelings about being a good mother. I never felt like a very good mother when I gave him the PediaSure because it didn’t have any love in it. I couldn’t tell if and when I met his needs. And that was important to me. It was important to know for a child who can’t speak, that he’s not hungry and I have no way to know that when he eats like this.

Dreaming Again’s comment brought it all back to me. It’s about how your life can change in an instant. It’s about how a decision made in the hospital can have a huge impact at home. Sometimes, you need to follow the rules and then sometimes, you need to stand up for what you believe is right. And sometimes, you make the changes gradually. I thought about her comment and then remembered when they suggested a hospital bed for Dear Son. I put off the bed for many years until finally, I knew it was necessary for him. And when I did, I made sure that it fit with our family life and I made it part of our home. And that’s what I wish for Dreaming Again.

If it were me, I’d bring my husband home and let him sleep in our bed again, after five weeks of being away. I’d be willing to bet it would do both of them good in terms of healing. I would also suspect that one of two things would happen. One, they’d realize that sleeping in the same bed, despite all of the other equipment he has, was wonderful or two, that his medical needs were so severe that the twin bed they prescribed was necessary and the right choice. But then, they will have come to that decision instead of the decision being made for them. They might not come to the second part right away, but over time, they might feel that it was necessary and the benefits would outweigh the negatives. It would make the transition a lot easier.

We take so much for granted. But while we need good medical care, we also need to be protective of the things that make our house a home. Sometimes, we need to make medical decisions with our heads and other times, with our hearts. These changes are hard because it changes the way we define ourselves and how we show our love to those we care about the most; as a mother, cooking for my Dear Son and her as a wife, sleeping with her husband. And sometimes, making those changes, takes time. It’s hard giving up things you love and rituals you loved for the unknown. Somehow, nothing quite compares to that. But in the end, it’s about doing what we need to do for those we love. It’s about loving, honoring and caring for them, in the best way that we can. I think that’s called, “Gracious Living”. And that never goes out of style.