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.

Spine Surgery Update

Surgery went fine yesterday. I am glad it's over. Had severe nausea after the surgery which is expected but getting better. Had a lot of bleeding when they took both IVs out; they had a hard time stopping it. Went in at 9:30 a.m. for a 10 a.m. surgery. Surgery was done at 12 noon and took 1.5 hours, woke up at 3:30 p.m. with severe nausea and out of the hospital by 6 p.m. I was ambulatory and totally independent by 9 p.m. Didn't sleep much and still can't lie down yet. I have some new numbness in my right thigh but that should go away soon.

The pain is gone from my left leg however my back is still pretty sore so it will be a few days before I can tell if it worked. I am taking some extra strength Tylenol right now for pain.

I am home this morning and on my own today.

I called and spoke with the Respite House last night caring for Dear Son. They put him in a rocking chair after school and he loved it! They said he was so happy! They started his dinner by 5 p.m. and had his meds in by 5:15 p.m. so that made me happy. He has another young man around nine or ten years old for a roommate and he loves that! I hope to talk to him today and I'd love to visit him tomorrow if I can get there.

That's all for now. Thank you for all of your support.

For the Love of Dear Son…

I saw Dear Son sitting in the wheelchair. The school bus had just arrived at our house and the bus driver and his new aide were searching for my number in their cell phones. Normally, I am always there when Dear Son gets home from school, but today, the bus had arrived a half hour early and I was just pulling up behind it. The aide saw me and turned Dear Son’s wheelchair in my direction and I saw his face. He had a startled look on it, his eyes searching desperately for me, but he couldn’t locate his Mom. He kept looking around for me, not recognizing my car which was only twenty five feet away, behind the school bus. The bus driver caught a glimpse of me however it took a minute for him to raise the ramp with his remote control and then a few minutes or so before he could pull the bus forward enough so I could pull up into the driveway. Dear Son was still looking frantically around, his face startled as if to say, “Where is my Mom? Where is my Mom?” My heart broke as I saw his face. If it were a movie, they would replay the words over and over again, as I did in my head, imagining what was going on in Dear Son’s mind. I called out to him as I passed the wheelchair and told him I’d be right with him in a minute, as soon as I parked the car.

Dear Son processes things he hears better than things he sees, especially when he’s nervous. As soon as I saw him, I kissed him and put my hand on his shoulder and told him it was going to be fine. I said that I would never leave him alone and that I would be there when he gets off the school bus. I don’t think he felt very comforted as we walked into the house. I pushed the wheelchair in the living room, turned on the t.v. for him and told him I needed to get the groceries out of the car. After they were put away, I kneeled down and talked to him in the wheelchair. I looked him in the eye and told him that I was not going to leave him anywhere. I kissed him some more on the head and he leaned over and licked my hand. That’s his way of giving a kiss as he has little oral motor control. It’s also his way of thanking me for explaining it to him.

I have had this conversation with him many times before, especially when he’s in the hospital. I tell him that “where he goes, I go.” That’s our policy. If you get Dear Son, you get his mother. He likes it when I tell him that. I am like his protector, and more importantly the voice he doesn’t have.

The words felt different though since I knew that in twenty four hours, I’d be dropping him off at a facility that will care for him for the next two weeks, while I recover from back surgery. It’s been many years since I have trusted anyone to care for him for a twenty four hour period. My rule of thumb is that I will use a Respite sitter only during the daytime, after breakfast and before dinner is the window I use since I don’t like anyone else giving his meds. Too many mistakes. When I have a sitter, I prepare his lunch time meds in advance so there are no errors. He only has one medication at lunch, as opposed to the other times of the day where he has more. He’s on six seizure meds and two GI meds and the timing for him is important. Some have a half life and he has a Vagus Nerve Stimulator but the reality is that if you are too late with the meds, he can run into trouble. I am pretty punctual about his meds and never go over a one hour window. I give them four times a day but due to a recent change, I now give them five times a day. That’s a lot for someone else to administer, even medical professionals, and a lot of room for errors.

I talked to Dear Son several times over the last two weeks, talking about my surgery. I try to keep it fairly simple. I told him that I need to have some surgery on my back and have to go in the hospital so I have to have someone else take care of him for a while until I can lift him again. I tell him that he has to help me and then once it’s better he can come back home again. I tell him I need the surgery so I can keep taking care of him.

Deep down, it’s been difficult. I’ve have back issues since the third grade and I’ve needed surgery for many years to fix my issues. I also have three large disc herniations in addition to my existing issues. For the first time, my back issues were so bad, that I wondered how I can continue to lift him. I have been in severe pain for four months now. In the beginning, it felt like a bomb blew up in my back and I just wanted to scream at the top of my lungs the entire day. It improved somewhat after the anti-imflammatory medication but it’s been worse the last ten days since they had me discontinue it prior to the surgery. I do have a Hoyer lift but still, there are a lot of times when a Hoyer lift just won’t do the trick and you have to use your muscles. I worry about the “what ifs” and if I am going to be able to take care of him when this is over. The good news is that it’s minimally invasive with no hospital stay but I don’t know what that means in terms of really being able to lift him. I have him there two weeks.

I decided a long time ago that I would always take care of him and that I would do whatever it took to do that. Along the way, people will ask me about putting him in a home and in the last few years, I have said I “may” think about that when he’s an adult, but that’s as far as I will go. I believe that kids should live at home. I wouldn’t want to have to live somewhere else and I don’t want that for my Dear Son. When your child has mental and physical disabilities, they need you “more” not less. You are their protector. Mistakes happen and that’s why you need to care for them. I’ve done numerous hospitalizations with him over the years and I’ve seen many medication errors or medication that is late, etc. I know that being there is the best thing you can do for your child.

So tonight, I’ll have to take a leap of faith. I’ll drop Dear Son off after his dinner and I’ll have to let someone else give him his midnight meds, morning meds, get him off to school and essentially take care of him until I am able to get there to see him. He’s only three blocks from my house, but I am not supposed to drive for ten days. I plan on breaking that rule as soon as I am able since I can’t go without seeing him for more than a day.

I think about him often, especially when he’s at his Dad’s for the weekend. I love being able to sleep but the house is really empty when he’s not here. When he comes home, we have this little ritual. That night, when he comes home, as I tuck him into bed, I tell him that I hope he had a good time at his Dad’s but that I am really glad he is home. I tell him that it’s not the same without him here and that I can’t sleep very well because it’s true. He smiles when I tell him that and he’ll lick (kiss) my hand. So tonight, I’ll drop him off and tomorrow I’ll have the surgery. But I doubt I’ll sleep very well, until I see him and reassure him that he’ll be coming home soon.

In the meantime, I have some pretty nice nurses who will care for him. I think he’ll love the place, it sits on three acres and has a nice big rocking chair for him, along with a wheelchair swing for him to swing on (It’s a ramp that you roll the wheelchair on and then you lock the wheelchair and the ramp swings back and forth.). I think he’ll love the other kids too and there will be a lot of activity and a lot to do. I’ll miss him a lot. It’s a gift to be able to take care of your children and a gift to have someone to take care of. So today after school, I’ll sit him down and tell him again, how much I love him and that I need him to help me until I can come over to see him. I’ll kiss him goodbye tonight knowing he’ll be comforting himself with his Bedtime Barney as he goes to sleep. In the meantime, I’ll say a prayer or two, and thank my lucky stars that I have people who will take good care of him until I am on my feet.

Note: Dear Son's Dad and I dropped him off last night at the Respite House and it went well. Both the nurse and the Director of Nursing, whom I know fairly well, stayed late so they could admit Dear Son and so that it would go well for me. They had a nice big rocking chair in his room which he was thrilled about! He started laughing and wanted to go in it right away! He rocked while they admitted him and I signed the papers. I brought in a notebook of his morning, afternoon and evening routines to make it easier for them and I sent all of his food and changing supplies to school in advance so I don't have to worry that he won't have his food to eat. All in all, a nice drop off. Dear Son wouldn't give me a kiss before I left though! He was happily nuzzling his Bedtime Barney and laughing when I left so I felt good.

This morning, I go in for back surgery. It may be a few days before I can post again.

Dear Son appears in the July 31st edition of Neurology

FYI-For those medical professsionals, you can read more about Dear Son and his particular mutation of the ARX gene in the July 31, 2007 edition of Neurology-Volume 69, Issue 5 which can be accessed at http://www.neurology.org/ The title of the article is, "Expansion of the first PolyA tract of ARX causes infantile spasms and status dystonicus." Dear Son is referenced in the article as Patient #4 and appears in Video #4. The video of Dear Son was taken a few years back shortly after the gene was discovered. An MRI of his brain is included in the article.

The geneticist also informed me that another co-worker will have a mouse model of Dear Son's mutation ready in the next six months or so and one of his colleagues in another city will have a mouse model and test different meds in them, although this will probably take several years.

As an FYI, Dear Son was tested for the ARX gene shortly after it was discovered. He was tested after the geneticist who discovered it was doing rounds (Dear Son was hospitalized at the time)and thought he fit the profile for the gene. Dear Son tested positive for the ARX mutation and shortly after that, I agreed to the video which you will see in Video #4. At around the same time, they asked for a skin sample (DNA) so they could create a mouse of the gene and I agreed. Although the gene is x-linked, I tested negative for the mutation. You can read more about Dear Son here.

I am thrilled that we are learning more about this gene however it is really hard to watch the videos of these kids.

Top 10 Things Dear Son Has Taught Me

10. He taught me that children with disabilities are not children to be afraid of, but rather, children to celebrate. They are the children who will cherish all the love, kindness and happiness that you bestow upon them, not once in a while, but every time they look you in the eye.

9. He taught me that while to the world I am one person, to him I am the world. I feel this every time I wrap his arm around my neck and he nearly chokes me giving me a hug since he can’t control his grip.

8. He showed me that things I took for granted before he was born, are blessings to him and those like him. To be able to run, to be able to walk and to be able to care for myself are the big goals in life for children like him.

7. He showed me how to communicate and make friends with others, without using any words. I watched in awe as he’d go into a room, any room, and charm them with his smile.

6. He taught me that giving of myself to care for him, is a gift I give myself.

5. He taught me that the value of a person can not be measured by what they can do, nor by what they bring to the table, but to what you learn about yourself while taking care of them. That’s the best take away you can get.

4. He taught me that people who brag about the things their children can do to make themselves look better, only look better for a minute in public, but never as good as the mother who can look themselves in the eye every day and know they gave their child all that they had that day.

3. He taught me that the rewards of being a mother are not diminished in any way, having a child with severe disabilities. What a wonderful surprise.

2. He taught me that when there is absolutely nothing left, there are always miracles.

1. And the top thing that having a child with disabilities has taught me, is that when you love a child with for who they are, and not what they can do, your heart will always sing with joy every time you see their beautiful face.

Be sure to check out other Top Ten lists this week when David, from Growing Up With A Disability hosts the next disability blog carnival on Thursday, August 23rd.

Home

Dear Son was released from the hospital yesterday. He is doing well and seems to be more alert since the med changes. More importantly, he is sleeping through the night.

We were initially scheduled to be released this morning however I was having a lot of leg and back pain and I wasn't certain I could endure another night. We left the hospital at 4 p.m. yesterday so it wasn't much of a difference to stay until our 10 a.m. release this morning, especially since Dear Son was stable.

Dear Son thoroughly enjoyed the day yesterday, since the clowns stopped by to see him for the second time in the last two days. He had some big belly laughs with all of their antics. It's great to see him laughing so hard and he's always a little sad when they leave.

He was thrilled to leave the hospital yesterday. He laughed and yelled out from the minute I put him in the wheelchair to go home until he got outside to get into the car.

Thank you for all of your concern for Dear Son. It was appreciated.

Update

Dear Son continued to sleep through the night on the new dose of medicine however he also began sleeping through the day as well. As a result of the increased meds, his EEG did not show any seizures, although it did show abnormal activity. Since that time, they have reviewed his seizure meds and decided to remove the Phenobarbital. The Phenobarbital, causes the other medicines to metabolize faster. Once they remove this, the drug levels of the other medicines should increase and therefore they will be able to reduce his overall number and quantity of medications since it will take less medicine to attain a therapeutic level. It will take approximately a month or so before that drug is out of his system and around three months overall to adjust the other medications. In the interim, removal of this medication may cause some breakthrough seizures during this time. As a result, they will be keeping him there a few more days as we begin this process.

One of the questions that I had was that Dear Son is a hyperutilizer of his medications and I was curious as to how much of the hyperutilization as due to Dear Son vs. the Phenobarbital. They aren't sure so we'll have to wait and see. (Because Dear Son hyperutilizes his seizure medications, it's important to get "trough" levels.)

We made the first changes yesterday and he seemed to have a pretty good seizure this morning. I suspect as we decrease these medications he will become more alert.

As a follow up to a previous post regarding the school bus accident and aide for summer school, I met with the Special Education Cooperative and the School District Representative yesterday and the IEP has been formally changed to allow for an aide for him on the school bus. In addition, they will also request an air conditioned bus for both the normal school year and summer school. They had no problem with either request.

I probably won't post again until possibly this weekend unless we leave the hospital sooner.

Dear Son

Dear Son was admitted to Big Academic Medical Center yesterday for some EEG testing. For the last few weeks, he had not been sleeping through the night and I was up many times with him, and some nights upwards of fifty times a night. At one point, he was not sleeping more than five to ten minutes at a time. He was also getting quite weak, unable to sit up for only a brief period of time in the morning and then would sleep the rest of the day. I paged the neurologist several times last week and we made several increases to one of the medications and at the end of last week, finally slept through the night and unfortunately, the entire next day. At that point, it was decided that we should bring him in for some EEG testing. He has slept through the night the last three nights and perhaps we have the dosage down now so I am not sure what this test will show. At the very least, we need to have more information. I suspect we will be there for two or three days depending on what the EEG shows.

As you may recall, Dear Son's disabilities were caused by the ARX gene mutation. As a result of this mutation, he has no GABA and he has intractable seizures. He does have a Vagus Nerve Stimulator implanted, which has worked well, but is now on the maximum setting.

As a result of his inability to sleep, I have not slept very much, hence the delay in any postings. In addition, I had to terminate the babysitter last week which only added to the mix. It's always difficult trying to find some good, reliable help for special kids like Dear Son.

Dear Son is in good spirits and is enjoying country music (his favorite) while we are there. The television in our room has not worked since we were admitted and it's been a long night without pc access or television. In my haste, I left most of my reading materials at home.

I will post an update as soon as I have some information although I suspect it won't be until later this week.

Thank you for your concern for Dear Son. Your comments always delight and amaze us.

*Photo is of Dear Son as a little boy, prior to strabismus surgery.

New Project: Medicine Tray

From time to time, I create new projects in my free time. In the past month, I created this new medicine tray for Dear Son. It worked out so well, I thought I'd share it with you.

A few months ago, when I started thinking about re-decorating Dear Son’s bedroom, I sat down and wrote out some of my wants and needs. One of the items I wanted was a tray to hold his medications. Currently, when I give him his medications, I place the syringes on a plate and take them to his room. I have to lie a pad down on his bed so that the syringes don’t roll off and get medication on the bed. (I use a separate container to hold his feeding bag and his formula so that wasn’t an issue.)

I looked around for quite some time to find the right tray. I needed one large enough to hold his syringes but light enough to make it easier to carry since I am often carrying his other bin that holds the formula, feeding tube and feeding bag. Many of the ones I saw were more of a breakfast tray, which would have been too heavy. I needed one light enough to carry in one hand. I checked out some wooden ones, some wicker ones, metal ones however none seemed to fit the bill. I saw some with some mosaic tiles on them and some with all sorts of designs. Most were too heavy and too large.

I was about to give up with finding the right tray-large enough to hold all of the syringes and light enough to carry with one hand when I stopped in Michael's, the craft store one day. I was looking at all of the ways they organized their art supplies and looking for some new organizing products for one of my clients. It was there that I came across a small, lightweight, unfinished tray, just perfect for his medications. Usually craft stores drive me insane and I can't wait to get out of them however I had some free time so I decided to really look around. The tray was only $2.99. I took it home and worked perfectly! I painted it white and then used some of the wallpaper that I purchased (I use that as drawer liners to line Dear Son’s nightstand and dresser drawers.) and cut it to fit the tray. It works perfect. And the best part is, it's is amazingly functional. I love using it. I am still trying to find some kind of medium to seal the tray. Until then, I am using parchment paper or aluminum foil on top of it so it doesn’t get messed up. I have thought about getting a piece of glass cut to insert on top of the tray.

After I began using the tray, I liked it even more. I can now prepare his midnight meds right after dinner, crush the pills and set them on the tray until it's time to give them. I add water right before administering. I also use the tray to prepare his lunch time medication that the sitter needs to give. This helps since I don't have to worry about her spilling any medication on the carpet or upholstery.

Picture #1: The empty tray on Dear Son's bed.

Picture #2: Dinner meds and a flush.

His World, My World, Our World

It seemed like such a simple thing. Dear Son was sitting in his wheelchair, straining to look around the vase on the table to see the ground squirrel sitting on the edge of my flower pot. I had just wheeled him into the dining room, so I could brush his teeth and wash his face and hands, like I do every morning when I noticed the little ground squirrel on the patio outside. He’s a cute little fellow, who is the first one at the bird feeder in the morning, stealing all the sunflower seeds from the bird seed mix and storing it away for the winter. His antics are watched closely by our cat Wiggles, who sits next to the patio door, for a bird’s eye view of the activities. The ground squirrel is affectionaly referred to as,”Wiggle’s little buddy.”

The ground squirrel has taken a liking to standing on the edge of my flower pot and looking around or sometimes chirping. The cat sits and watches him, with his tail flopping back and forth and Dear Son enjoys hearing me talk about the activities.

As I washed his face, I pointed out Wiggle’s Little Buddy to Dear Son, sitting on my flower pot chirping. His wheelchair had been facing me so I could wash his face and I was moved his chair forward so he could see the ground squirrel.

His eyes struggled to find him and then they locked onto the squirrel and a broad smile broke out across his face. He knew the ground squirrel should not be sitting on the flower pot as he was going to get in trouble. The prospect of someone getting in trouble, is quite delightful to Dear Son. In actuality, no one really gets in trouble, I’ll just talk as if he might. I tell Dear Son that the ground squirrel had better get out of my flower pot or he’s going to get “in trouble.” Dear Son laughs as he knows I don’t like the little ground squirrel dumping the dirt of my flower pot onto the ground hence the smile. He knew I was going to tell him that the ground squirrel had better get out of my flower pot “now”.

It was a simple thing, Dear Son looking out the window seeing the antics of the ground squirrel, but it was more like fifteen years in the making.

When Dear Son was just a baby, I remember distinctly, trying to get him into my world. It was as if there was a giant clear plastic bubble surrounding him where we could see in but he could never see out of the bubble. His world was defined as anything that happened inside the bubble and he tuned out everything that went on in the real world. Probably too much information or too stimulating for a child with seizures.

I remember the early days, when Dear Son was just a baby, lying on the carpet while I read him books. It was frustrating because I could never get through to him. Sure I’d love him and care for him but the reality was, that he never indicated that he was aware of my activities. I grew frustrated and knew I had to figure out a way to connect with him. I began to read him books, in a sing song fashion, always high pitched of sorts and with the same cadence every time. It was often more like a poem or a song than a book. Each book having it’s own tone. I loved rubbing Dear Son’s little feet, removing his socks as I read him stories. On one particular day, I was reading Dr. Seuss’s Foot book to him and I decided to put in his name and referenced his feet. Prior to putting in Dear Son’s pet name, I changed the cadence ending in a sweet sing song voice with the words, “even Dear Son’s feet.” As I said the words, I grabbed his feet and rubbed them and rocked them back and forth. I read this story over and over and over again, night after night. I would spend hours sometimes reading to him, maybe an hour or so at a time. On one particular night, right before I got to the part about Dear Son’s feet, he made a face indicating that he knew what was coming next, the part where I grab and rub his feet. I don’t remember now if it was a smile per se or just his face lighting up but I remember the fact that he was anticipating what was coming next, the rubbing of his feet, and I knew then, that he had memory. That was huge.

With that information, I continued reading to him but also talking to him a million times a day, about just about anything. But the one thing I could never get him to do was to pay attention to things visually, it was always auditory things that he attended to most, mainly my voice.

As the years went on, I remember trying to get him to pay attention to the things around him. If there wasn’t any interaction, he acted as if he didn’t know it was there. I remember distinctly our mallard ducks, Dolly and Donald, that came to our bird feeder every day. They sit right outside our French doors, eating the bird seed, with Dear Son sitting and leaning against the window, his nose pressed tightly against it, and yet, he never even noticed them. I would point out the ducks and talk about the ducks, but when I would call his attention to something to look at, he never acknowledged it.

Over the years, it never changed. There was his world and my world. Most of the time, he would be in his world, tuning out all of his surroundings. It was odd in so many ways, that he would just tune so much out. I always viewed it as sensory overload even when his seizures were well controlled. I would be frustrated at times, with his inability to connect with the outside world, wondering just how I might get through.

Over the years, you could see glimmers of light. When he was four years old, he enjoyed the Christmas tree at school. He seemed to like the bright lights or more importantly, trying to pull on them. He’d reach and reach trying to get those arms and hands that weren’t functional to work. At some point, his crippled grasp would get entangled with the lights. This was success of course.

These were brief pockets of course, reaching out into the outside world or my world. Most of the time, he’d be oblivious to his surroundings, not noticing a thing as I wheeled him onto the little school bus each morning. I always wondered how I was ever going to get through to him and if he’d ever really be present in our world.

Bit by bit, over the years, he began to come into my world. Looking back, I’d have to say the turning point was probably daycare. When he was nine, I moved to a new area and had daycare for him. The kids were much younger, mostly two to five, and he was the only special needs child they ever had, but it did wonders for him. Soon the outside world, full of the antics of the other children, invaded his world. The kids fed him snacks, they played with him, they talked to him, they held his hand. They went where I could never go and made him want to be in our world. He was especially delighted when things went wrong at the daycare, the more chaos the better and if someone was getting scolded, all the better. He loved the prospect of someone getting into trouble. The daycare owner, in her slavakian accent, would tell the kids not to do something, and Dear Son’s eyes would light up, at the prospect of them getting into trouble. Sometimes, he’d laugh so hard, that the owner and all the kids would start laughing and he managed to turn the whole mood into one of laughter. That’s the kind of kid he was.

So while it seemed like a simple thing, looking out the window at the ground squirrel sitting on the edge of the flower pot, it was huge. No sooner than he looked, the ground squirrel jumped off the rim of the flower pot and ran as fast as he could into the yard. Back into his world. And as for Dear Son, he stayed in ours. Sometimes, the simple things, mean a lot.

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.

This is Not Your Father's Hospital Bed

You may recall several months ago, when I wrote this post regarding my feelings about getting Dear Son's new hospital bed. I was worried that it would look institutional and not feel like home. I thought I'd share with you the changes I made.


He received his hospital bed a while back. The bed had metal and plastic universal end pieces which meant the headboard and footboard were the same height. While perfectly functional, it looked odd with the headboard so short. I wanted to make the bed look more inviting, like a teenager's bed might be and more modern so I made a few changes.

Here is the before picture. Note the dreary color of the headboard and footboard and the low height. Very boring.



I took the bed apart and painted the headboard and footboard black. I decided to create a faux headboard to create some height to the actual headboard. This was a tad difficult since I could not remove the headboard on the hospital bed since it was functional. I decided to create something to sit behind the actual headboard that visually would look like the same headboard.

My initial idea was to create a mosaic glass tile headboard in shades of yellow to match the spread. The goal was the one inch glass tiles would mimic the pattern in the spread. I soon learned that not only is it difficult to find glass tiles, but there was a minimum quantity to order. The most difficult part was that yellow was the hardest of all colors to make so the selection was quite limited. I never found what I was looking for so I went to Plan B.

Plan B involved creating a faux headboard out of bamboo. I spray painted the bamboo a gloss black to match the newly painted headboard and footboard and had Dear Son's Dad attach it to the wall. This creates more height to the headboard visually and allows the bed to remain fully functional.



Here is a picture of the entire bed where you see both the headboard and the footboard.


After I finished the headboard, I labeled the items in his nightstand.


I still have a few more things to do; reline his nightstand, swap out the knobs from pewter to shiny silver ones to match the side rails, but other than that, it's done. I wanted it to reflect Dear Son so the picture above his bed is one I took at the Arboretum last fall. Dear Son loves the outdoors and we love to walk there. At least now, it feels more like a room and less like a hospital bed.

What was most surprising was Dear Son's reaction when I put him to bed. He couldn't stop looking at the headboard and smiling. He got up at 4:15 a.m. the next day and was staring at it. Any time he wakes up and needs his diaper changed, he looks at it and smiles. That's the best part of any makeover. Even Dear Son can see that.

Welcome!

I finally got around to updating the links on my side bar. Please be sure to visit Fat Doctor at her new site of fatdoctor.org. Click on link in my side bar and it will take you to her new site. She moved a while back but I didn't have a chance to update my links. She's one of my favorite bloggers.

Also, please welcome Ryn Tales. Kathryn and Dave are parents to Ellie, a 27 weeker. I hope you enjoy her blog as much as I do. As for Ellie, she's a real cutie pie.

An Inspirational Father Son Story for Father's Day

If you haven't seen this story, I encourage you to read it. This is a story about a son with cerebral palsy, who can't talk or walk, and whose father, who has been taking his son and entering marathons and triathalons for almost twenty years. I have seen this story many times over the years, but it never fails to inspire me.


The son tells his story here titled, "What My Father Means To Me". It's an "emotional tribute to an incredible and inspirational Dad, from his equally incredible and inspirational son." What I love about this story is the son's comment, "When I'm running, I feel like my disability disappears!"

Their goal, "is to educate people about how the disabled can lead normal lives." I think their story is important for both disabled and non-disabed people. In the early years with Dear Son, I wondered a lot, "How do I do this?" or "How can I do things with Dear Son that other people take for granted?" There is certainly a learning curve. While we don't run marathons, Dear Son and I have been walking for years. When he was small, we used to walk outside on a walking trail and he'd let out a scream as soon as I opened the door, since he was so happy to go outside. He still gets excited today whenever we take a walk or go outside to sit in the rocking chairs, only now he starts laughing non-stop to let me know he's excited. It's definitely a lot more work to do anything when your children are special needs; sometimes getting ready to go somewhere can wear you out before you've left the house.

I love this story and hope you will too.

Happy Father's Day to all of the fathers.

A Father’s Day Tribute to Dear Son’s Dad

I was looking through the rack trying to find “the” Father’s Day card, but couldn’t. The signs on the display rack had some categories, as if to help you: funny, spiritual, just another Dad or something like that. I thought it was a bizarre category. I mean, who gets a card, for “just another Dad?”

I began reading the cards and eliminating most of them very quickly. There were kiddie ones from the kids to the father. No, Dear Son was much too old for that. There were funny cards, but Dear Son’s Dad doesn’t like funny cards. And then there were the serious ones, from a son to his father, on how much he appreciates the guidance from his father to get him where he is today or to make him the man he is today. Nope, that doesn’t fit and wasn’t even close. None of them were “it.”

I grew frustrated in my search. This was my one window of opportunity to get a card this week, after I got my hair done. My one window, since Dad was babysitting while I went to the beauty shop. My car is too small to get Dear Son into it any more, or at least by myself. It’s not that he’s that huge, it’s just that I don’t have the room I need when I am lifting him in so I can’t run any errands at all, unless Dad is over to babysit. Plus, it’s June. And that means he’s out of school and I have no babysitter this month. Dad’s nice enough to work with me for the month of June, sitting so I can work and so I can get my hair done.

A woman was standing next to me with her toddler in her shopping cart. She had been mulling over the cards a bit and I happened to mention to her that there wasn’t much of a selection, even though there were lots of cards. She was quick to point out, that it didn’t matter, she just needed a card and she’d be on her way, as if getting a card, any card, fulfilled her obligation. At least she didn’t come empty handed. I thought it sounded almost callous but certainly easy.

That pretty much sums up normal life versus life with a special needs child. It’s always easier. Ask any parent of a special needs what they’d like, and they’ll all tell you the same thing, “I’d like it to be easier.” Even if it’s only easier once in a while, that would be good. But back to Father’s Day.

I find a card, that says some of what I need and buy it. It was between that and the card with Andy Griffith and Opie, Dear Son’s Dad favorite father and son show. He used to sit and watch that show with Dear Son all the time, Dear Son on the couch next to him and Dad with his arm around him. It would particularly get to me when they had the Andy Griffith marathon’s. If I hear that whistle one more time…. Dear Son’s Dad didn’t seem to care though. He’d sit with Dear Son and they watch episode after episode. If I passed by the family room into the kitchen, Dad would whistle to let me know it’s on and then smile. I’d laugh because it drove me crazy and he knew it. I am not much for re-runs of anything. But they were happy and that’s all that counts.

There aren’t any glory days as the father of a special needs child. It’s not like you pay your dues and then you wake up one day and your son has a college degree, a great job and a beautiful wife and kids. It’s not to say it’s not rewarding, it’s just different.

Dear Son’s Dad commitment goes far beyond that. Instead, he’s busy buying diapers, wipes and changing pads, whenever we run out. Not only when we run out, but he’s nice enough to go to the store and get them, since I can’t get out with Dear Son. He works close by but lives fifty miles away. He makes sure though to always take care of Dear Son.

When Dear Son is in the hospital, I typically stay there with him twenty four hours a day and he’ll relieve me once a week, typically on Sundays. That’s because he carries the primary insurance and we have a unspoken policy that his work comes first. Plus, he can’t stand sleeping on that hospital bench, even if it’s only for one day. I work part time so I can care for Dear Son. It’s a few hours a week and just barely enough to make my bills and not much else. When Dear Son’s in the hospital, I try to work unless of course, he’s too sick, which means, that I can’t. He’ll make sure that I have enough to pay my bills, sometimes paying me for that day, so I can stay with Dear Son or paying for the parking for our hospital stays, which sometimes can get pretty expensive. These aren’t fun things, but things he does to make life easier for me and better for Dear Son, so that he’s well taken care of.

This year, with the growth of Dear Son, and my inability to afford a wheelchair van, he’s had to take on the new task of running all of our doctor appointments with me for Dear Son, even thought we are divorced and he lives far away. He has a sport utility and it’s much easier to get Dear Son in there plus there is a lot of room for his wheelchair.

These are just some of the ways, in which he takes good care of Dear Son. But mostly, it’s his unconditional love for Dear Son, a son who can’t give back, a son who can never say thanks and a son who will never be able to wish his Dad a Happy Father’s Day.

I doubt this was the vision Dad had, when we decided to have kids: to have a fifteen year old in diapers, unable to talk, unable to walk and unable to care for even the most basic of needs. But then again, he’s not an average Dad. He’s a great father. A man whose worth is measured by the little things, like a dry diaper and the big things, like taking care good care of your son and stepping up to the plate when the going gets tough. You have to respect a man whose worth will never be measured by his son’s accomplishments but rather by his son’s comfort. There’s no glory in that, but Dear Son sure sleeps better at night. And that’s the difference. He makes life easier for his son who doesn’t even know it. And there aren’t any cards for that. But there should be. Then again, they deserve more than that. They are the unsung heroes, who never get their day in the sun.

Happy Father’s Day to great Dad.

Update II

Since my last update, things started to get better. They made a change and increased his chest PT to every four hours and that made a dramatic difference for Dear Son. It was like he was a new man the next day. They then attempted to get him off the oxygen and went a little too fast and had to go back and increase it a little bit since the oxygen saturations kept dropping. I was hoping he'd be released Thursday morning however his oxygen saturations on room air were a bit low, at times dropping back to 88 or 89, and overall just a bit too low. They decided to keep him in another 24 hours to make sure he could handle the room air just fine and continued the chest PT every four hours.


I met with the ENT yesterday. They will be doing botox injections into the saliva glands to help with his night time choking. As you may recall, Dear Son has a lot of issues with night time choking since he is unable to manage his secretions (this is part of the progressive motor dysfunction/progressive degenerative disease). Normally, when saliva is released in your system, it is pushed into your mouth. When they administer the botox injections, it will prevent both of these, thus hopefully making it easier for Dear Son. He decided against doing the botox and Nissen together (the Nissen would assist with reflux) so that we can better measure the effectiveness of the botox vs. performing them both at the same time. They were uncertain as to how much of his issues were caused by being unable to manage his saliva vs. reflux. My best guess is that 80-90% of his choking is due to choking on his saliva with the remainder being reflux. If effective, botox injections are done every three to four months (it wears off). If we decide later he needs the Nissen, they can perform both the botox and the Nissen at the same time. If the botox is not effective (there are a small number of cases where it doesn't work) or if his issues continue with the botox, we can then talk about the next step, which would be removal of the saliva glands. I am hopeful we would not have to have that done. The botox injections are done once a month at Big Academic Medical Center and require a radiologist present during the injections. This should be done by the end of June and they will contact me once the schedule has been set.


Dear Son is very alert and back to his charming self. I left the hospital today since I had to work today and tomorrow and his Dad is covering and staying with him. Dear Son enjoys that since his Dad has plenty of country music loaded on his iPod.


I expect Dear Son to be released from the hospital today (Friday morning). He will be released with an antibiotic so he can complete the ten day course. I am excited that's he coming home and even more excited that they were able to control the pneumonia before it got any worse.


Thank you for all of your continued thoughts and prayers. It meant a lot to us.

Pneumonia Update

Dear Son is doing better. Since I last wrote, they continued to have issues controlling his fevers and when the fever rose, his oxygen saturation deteriorated and he had great difficulty breathing. My concern was that if the antibiotics were effective in controlling the infection, then I shouldn't be seeing the fever spikes and hence the difficulty breathing. They consulted with Infectious Diseases and they looked at where the pneumonia presented itself in the lungs and then the types of bacteria associated or rather that present in that location. There was some discussion with changing his antibiotics from Ceftriaxone and Vancomycin, to the next level antibiotic that is typically used for Vancomycin Resistant Pneumonias, however they decided against it. Instead, they changed his antibiotic to Zithromycin (this is a much lower level antibiotic). They determined that he had an atypical pneumonia and probably not an aspiration pneumonia, although they can't really rule it out. (This is good news and it was probably community based which essentially means it's a less serious pneumonia than say a MRSA.)



Once he was on Zithromycin, he began to wake up and open his eyes at times. He improved on that but continued to have issues with oxygen saturation; yesterday they changed the antibiotics again to one that covered a broader based spectrum. In addition, they took him off the mouth tent (he was at 100%) and put him on a nasal cannula at 5 liters. Dear Son ran into oxygen saturation issues again at around 2:15 a.m. this morning and his oxygen saturation had dropped to 84%-87%. They made some changes again and it's becoming more stable, and is now in the early nineties. (Dear Son is a mouth breather and that makes the nasal cannula a little less effective for him (in my opinion) and makes him work a little bit harder.) We have yet to get through the night without any issues. He is experiencing some slight issues with vomiting in the last twenty four hours which make it more difficult since it increases the risk of aspiration. Normally, Dear Son is unable to roll over and chokes on his saliva when he is on his back. He is having a more difficult time now since he is weaker and can't manage many changes in position (like for diaper changes) without heaving. I have yet to meet with the ENT. Prior to the pneumonia, we had experimented with some drying agents prior to surgery and I had been in contact with the ENT. Our next step will most likely be a Nissen (to control reflux) and botox injections into the saliva glands.


Today, they'll do another chest xray today and are re-evaluating his oxygen needs as well as increasing his respiratory treatments. Overall, not a serious pneumonia like he has had previously.


As you are aware, Dear Son has MRSA, which he most likely acquired from his multiple hospital stays (versus community based). While he does have MRSA, this is not a MRSA pneumonia-it would only be considered a MRSA pneumonia if he had MRSA in his lungs (that's where it presented last year). In addition, they shared with me that patients like Dear Son who have had "two" MRSA pneumonias, have much weaker lungs than others. They also indicated, that although he had an atypical pneumonia, it could turn into a MRSA pneumonia. At the present time, I am not concerned about this happening since I think he is fairly stable.


In summary, an atypical pneumonia. I spoke with our Pediatrician today and he will remain here until he can sleep through the night and breathe room air. We have a ways to go before we get there since he doesn't seem to be able to manage decreases in the oxygen just yet. His normal baseline is fairly weak to begin with so I suspect we'll be here a few more days since I don't see that happening in the next day or so.


Thank you for your concern and your thoughts and prayers.