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.

Pneumonia

Dear Son was admitted to Big Academic Medical Center yesterday for pneumonia. I called the paramedics at 5 a.m. on Friday morning since he was breathing rapidly and shaking severely from the chills. His teacher had contacted me the day before and told me he had a fever of 99.8 in the afternoon and I began treating the fever with Motrin when he got home from school since it was starting to rise and again at midnight. Although I managed to get the fever down, by 4 a.m. on Friday morning he was breathing quite heavily and hard so I thought I'd take him to the Emergency Room. Before I could finish getting dressed, he began to have more respiratory distress, breathing rapidly and shaking severely from the chills. I took his temperature and it was normal (due to the Motrin I gave at midnight) however I became very uncomfortable and called 911. The paramedics arrived and his oxygen saturation was 88-92%, he was ice cold from the chills/shivering and his temp was normal. They took him to the nearest local ER. Upon arrival, they took a rectal temp and it had increased to 104 degrees. They began treating him however I was uncomfortable and requested a transfer to Big Academic Medical Center. Around 7 a.m. I paged Dear Son's doc and then called him at home. He arranged for the transfer. Due to impending storms, the helicopter was not allowed to fly so he was transported via ALS.



Big Academic Medical Center was able to stabalize him and he's now out of the Pediatric Intensive Care Unit. He has pneumonia. Other test results, include blood cultures, are pending. He is being treated with Ceftriaxone and Vancomycin. He is not vented and on oxygen at 100% so that is good. He seems relatively stable although there is still some difficulty controlling his fever and he continues to work pretty hard at times to breathe. He has been sleeping continuously since this began with the exception of opening his eyes once this morning and once yesterday afternoon.



At the present time, the cause is not known. He has had great difficulty over the past few months with choking episodes at night, that are due to his inability to manage his saliva, which is part of the progressive motor dysfunction and progressive degenerative disease. I had been working with the ENT to exhaust the non-surgical options prior to treating it surgically.



It is my understanding that they will run the full course of the antibiotics so I suspect we may be there a while.



I have extremely limited pc access but I will try and keep you posted.

Gray

I was in the kitchen staring at Dear Son’s plastic glasses. It was a cup with a squiggly straw built in, that came with a lid, kind of like a grown up sippy cup if there ever was such a thing. I remembered back to elementary school when they were going to teach him how to drink with a straw. Imagine going out somewhere and not being able to drink through a straw. The challenge was that the straw would move and wasn’t stable and, with a child who can’t sit up and isn’t stable themselves, along with his oral/motor issues, it’s a problem. A bigger concern, was how to give him a drink when we were out somewhere, on a really hot day. School took on the issue of teaching him to drink through a straw and I remember being amazed that he could do it. Granted, the straw in this case was built into the glass, however it’s the only kind of glass that every worked for Dear Son. You still had to tip the glass quite a bit and get the liquid pretty close to pouring out on it’s own, but he would eventually be able to suck enough that he could get the liquid he needed, in amounts greater than a teaspoon at a time. It was probably one of the biggest contributions the school system ever made to his life, in terms of really functional behavior for him. I took this glass with me wherever we went-outings, hospital visits and sent it to school. After all, he needed it to drink. Every family member we visited had this cup in their cupboard in case we visited.

I looked back at the glasses which sat neatly in a plastic container that was stored out of cabinet, since they were rarely used anymore. I still kept two in the cabinet with my regular drinking glasses, because I used it to give him a drink of water via mouth, after I brushed his teeth, but he rarely drinks anything anymore.

Last year, after the second suspected MRSA pneumonia, Dear Son was no longer allowed to drink or eat anything by mouth, due to the risk of aspiration. Since that time, he’s been on g- tube feeds consisting of vanilla Pedia Sure. I had always hoped he might eat again but in the back of my mind, I knew that it probably was never going to be a “viable” option. That’s how it is with these kids, everything is always very gradual, very gray. There’s never a black or white to most of it, but rather, you always fall a bit short of the black or white, hence the gray.

Everything is pretty much like that. For most babies, you mark in the baby book, the day they rolled over, or the day the walked for the first time. With special needs kids, or at least Dear Son, there is never “the day”. For example, it took many years before he could even bear weight. And then, they tried multiple walkers for him, the biggest issue being finding a walker that didn’t require the use of your hands or arms, since his never worked. Finally, in elementary school, they found a walker that worked for him. It had supports that went around his torso to hold him up. The therapists would help him and walk with him it the walker until finally, he could take a few steps in the walker without them touching the walker. One day, when he was around ten or so, he actually could walk with me holding onto his bicep very firmly, without a walker and just his AFO’s (leg braces) on. He eventually took one step on his own one day. So what day is it that he finally walked? It’s all kind of gray.

And then now, I have his AFO’s. They are sitting on a shelf in his bedroom. He hasn’t used them in over two years now and I suspect they may not even fit anymore. I don’t bother trying them on but yet, I’d feel a bit guilty about throwing them out, after all they were kind of expensive ($2200). So they sit there. Dear Son hasn’t been able to weight bear (stand) for over three years now. He has a progressive degenerative disease so it’s not like he’ll ever stand again. I took him to the Orthopedic Surgeon a few weeks ago to see if he needed to wear them just to keep his feet straight however he didn’t think it was necessary. So I guess I can throw them out.

With Dear Son, you spend a lot of time waiting for the big day to come, the day they might stand, the day they might walk, the day they might drink on their own, but the day never really just comes. You have a lot of gray in between until you wake up one day and think, “oh, he just stood up by himself”. You want the black and white so much but when you finally achieve the success you’ve waited for so long, it’s really anti-climatic.

It’s just as climatic winding down, except it’s different. As Dear Son’s mother, I always feel I should be the one to champion or embrace all of the possibilities for him. So when his skills dimish, you take them away gracefully, by moving them out of direct sight as in the glasses or leaving them on the shelf, like the AFOs. It would seem a bit harsh to throw away the AFOs right away just as it would to toss away all of the glasses as soon as he started the g-tube feeds. Instead, you acknowledge the gray, leaving the glasses and the AFOs on the shelf, until they give you sign that they are no longer required. And that’s were it gets messy.

I was reading an organizing book last week, as I normally do, since it’s a hobby of mine. At one point, the author talked about persuading a woman to get rid of one of her kid’s things that was sentimental to her as in things that represented strong memories to her. He said the reason that it’s hard is usually because we don’t want to get rid of the memory and by losing the item, we are afraid we will forget the memory. He goes on to talk to this woman about her kids and the memory of her kid to this particular item. Then he says, “We talked about her kids, and how the best memories weren’t limited to the past. They had big memories ahead. New memories-big birthdays, graduations, and transformations were down the road for all of them.” And therein lies the dilemma-the best days or best memories of Dear Son are not ahead of him, they are behind him. And that’s where the gray comes in. Sometimes, gray is good. It’s beats black any day.

*Photo of Dear Son's plastic Sip-A-Mug.

Memorial Day Weekend

This is a picture of Dear Son on Memorial Day weekend that his Aunt took. He had a good time getting out but he got tired pretty fast. He was only up for three hours that day and he was totally exhausted. He slept the rest of the day. He thoroughly enjoyed the rocking chair though and liked being outside on a such a beautiful day.

Normal Stuff

I was cooking dinner for myself while Dear Son took his after school nap. Dinner is a bit of a lonely exercise, cooking for one. I don’t eat many processed foods, first because they aren’t that great for you and second, because they don’t taste very good, hence the cooking a real meal instead of a microwaved one. I am pretty simple in that regards, I just like real home cooked food. I never cooked for many years and took up cooking a few years back. Now I rather enjoy cooking, but now that Dear Son can’t eat real food, it’s not the same. For many months, I didn’t cook after he wasn’t able to eat real food because it seemed mean to cook food and let him smell it but not eat it anymore. I understand why he can’t eat and he has some real swallowing issues, to the point where he doesn’t even want a drink of any kind anymore by mouth. I am finally o.k. with him not being able to eat, but sometimes, I’d just like to cook dinner for him. But it’s not just dinner really. It’s that sometimes I want to do "normal" stuff. Things other people take for granted.

There are so many things sometimes that people don’t think about, that it would be nice to do. Like, it would be nice in the evening, if I had to run to the grocery store, or go to the library, that I could just get Dear Son in the car and go. Just have him walk to the car, get in and leave. That’s it. I wouldn’t have to pack any bags, change any diapers ahead of time, or do anything. Just get in my car and go. I can’t really leave for errands anymore or for anything really with him, without some assistance now but that’s not even the point. The point is that it would be nice just to be “normal”.

The other day I was talking to a woman, who had purchased a gift for her daughter’s friend’s birthday. She was saying that it was getting expensive to buy birthday gifts for all of the friends. She didn’t know anything about Dear Son and I didn’t say anything. It was the kind of conversation that you have with a stranger in passing, one that doesn’t require all the details of our lives. I listened and just kind of agreed that things were more expensive. I can’t remember ever having any of Dear Son’s classmates over to our house, ever, because it’s just too hard. We’ve never had a birthday party with kids from school or his friends, nor have we ever been invited to any with his special needs classmates in fifteen years. I do have a cake made and send it to school but when that woman said that, I thought to myself, that it was a “high class” problem she had. She didn’t realize it of course, because that was her reality. It wasn’t wrong for her to think that way and it was probably true. It’s just that when your kids are special needs, you always have bigger issues than nearly everyone else. Always. We just don’t talk about it much.

The other day, I was at a corporate client who specializes in caring for special needs children; they perform both respite care and transition care for children who are able to leave the hospital but perhaps the parents or caregivers need additional medical training in how to care for their children’s medical needs-namely vents and trachs. One little girl had just arrived. She was a foster child and brought in by her foster parent. She was frightened at first and not sure she should trust any of the adults but, more importantly, wasn’t sure she could trust the other little girls that were staying there as well. She had this look of fear on her face, then she might give a quick smile, followed by the "fear face" again. The staff member tried to make her feel more comfortable saying she was here for her very first sleepover, to which I added, that she was on a “big girl” weekend. Her father proceeded to make umpteen trips to the car to get all of her “supplies” and things. She was only four or so but had never been around any children and had no siblings. She hadn’t been around any other children, because kids don’t come over to the house. They don’t come over because, it’s just too much work. I wrote about this issue some time ago here. I imagined for a moment how different she might be, if she had more interactions with other children. I imagined how it might affect her self esteem, her personality and her overall development. I imagined how it impacted all kids like her. If we had daycare for special needs, and integrated them in with normal kids, it may not be an issue at all. But they aren’t normal and they don’t do normal stuff. Other kids get to sleep over at a friend’s house, special needs kids sleep over at a Respite House with people they don’t know. I have a friend in another state that has two normal kids and one that is special needs. When they go away for a day, the normal kids stay with their grandparents and the special needs child comes with them or goes to Respite care. That’s the way it is. It’s not a bad thing, it’s just different. I am not sure you could have another special needs friend sleep over. Not only would it be too hard, I think another parent would think you were totally nuts asking if their kid could stay at your house, because it's just not "done" for special needs. And I can’t imagine having the pressure of making sure that I could meet all of the kids special needs, let alone the liability factor. So much for the normal stuff.

This weekend, a family member is having a cookout on Sunday for Memorial Day. Dear Son and I were invited however I am not certain I can lift Dear Son in the car anymore so I am having to figure out some options. While it’s possible that his Dad could take him for the evening so I could go alone, I don’t want Dear Son to miss out on a family outing. He would really enjoy himself and they would enjoy seeing him too. It’s possible that Dad will come over and attend with us, which would make it easier, since he has an SUV and the wheelchair fits in the back and Dear Son fits better in his car, let alone Dad’s big muscles to lift him into the car. Those 21 inch biceps come in handy for that. The family member offered to switch the cookout to another weekend, when I didn’t have Dear Son, to make it easier for me so I could attend, but I declined. I’d rather Dear Son attend and enjoy the day with us.

But it’s not about solving all of the issues that we face with our special needs kids. It’s about wanting things to be easier, for us and for them, for just a day or just a moment in time. Things other people take for granted. And just once, I’d like to complain that it’s too hot to sit on the bleachers and watch him play soccer.

The MRSA Pneumonia: Part IV-The Conclusion

This is the conclusion of the MRSA Pneumonia which Dear Son had last year on Mother’s Day. He would remain in the hospital for almost a month and then was released in time to graduate from the 8th grade. He was home approximately a week and a half only to have a second “suspected” MRSA pneumonia. He was treated for a full ten days of antibiotics in the hospital and then released. After that, he was no longer able to eat food by mouth due to risk of aspiration and began g tube feedings of Pedia Sure which he remains on today. Thankfully, he has not had any more relapses of the pneumonia. He continues to be unable to weight bear and has never regained his ability to eat due to his failure to swallow.

***

It is now Monday. Thankfully, Mother’s Day has passed. The transfusion that was performed Sunday evening (Mother’s Day) is the turning point for the MRSA pneumonia. It stabilized the blood pressure although he was still considered a bad stable. Over the next few days things begin to improve. The vent settings are reduced, two of the three antibiotics run their course. The ventilator was a major concern up to this point since Dear Son is not very mobile normally. Because of this, I am told that it makes getting off the ventilator more difficult. Dear Son eventually gets off the ventilator and is moved out of the PICU to a Pediatrics floor for a week and is finally released to go home. Today, he remains on g tube feedings five times a day, respiratory therapy four times a day, chest PT four times a day, his seizure meds four times a day and other than that seems quite happy. He is still not able to eat or drink at all. I miss cooking his favorite meals and somehow it’s not quite the same. I am told the recovery is two to three months.

In the end, I am thankful that he recovered. I wonder how many more of these emergencies he will have and how many more he can endure and how many more I can endure. They change you after a while. The little things that may have irritated me ten years ago, are not a big deal. I have a hard time not rolling my eyes when people complain about little things. I’d often like to tell them to quit complaining but I don’t because I realize that their life is “normal”.

It changes you too because it gets harder and harder to define a true emergency. When you’ve been through the big stuff, the little stuff seems so minor, that you wonder if you should even call. I often use the analogy that it’s like having a fire in your house every day-at what point does the fire get big enough that you need to call the fire department? For other people, any fire in their house will elicit a call to the fire department.

Having all of these emergencies prepares you oddly enough. I have an up to date emergency information sheet, a car bag packed at all times for emergencies on the road, a things to take to the hospital list, etc, etc. But I am never prepared for a funeral.

Sometimes people tell me, “How do you do it?” or “You seem to be handling it well.” I do handle it pretty well but then I’ll crash after the crisis has peaked. When the crisis began, I was far more stressed when they weren’t getting results at the local hospital. I can easily see the difference in the level of medical care at each facility. I was relieved when the Air Team arrived. I was concerned when he was comatose and unresponsive on the ventilator. I was panicked when they tested the power at the hospital when Dear Son was on the ventilator and didn’t bother to tell the parents. But none of it compared to the depths of depression I felt when the doc said Dear Son was lucky to be alive. It’s when the crisis has passed that you have a chance to reflect on the events of the past few days or weeks. You feel like you’ve just dodged a bullet and then someone says, “Wow, that was close.” You never forget how close it was.

I realize too that one of these days, I am not going to be so lucky. One of the things I miss the most, is working full time and having a career. These last few years have been bittersweet. While I love taking care of Dear Son, I desperately miss having a career. When Dear Son passes, I will be able to resume my career, only to come home to an empty house and realize that the good times were when Dear Son was alive, not coming home to an empty house.

And then there are the issues of when is it all enough? When do you stop trying to save him and when do you let him go? These are the kinds of discussions that people have with their heads. People will debate these issues often but when you are in the situation and have to make a decision, I find I follow my heart. When you are in the trenches, it’s pretty hard to let them go. You don’t care for them twenty four hours a day and then let it all go so easily. I pray often that I’ll never have to make the decision to “let” Dear Son go.

And finally, there are always those who feel that we shouldn’t save these kids. That somehow, because they are severely disabled, that their lives are less or that they are worth less than other lives. I go to my son’s school and I really look at these children. They are happy. They live every day from the heart. It is more often than not, our paradigm that we live in and because they don’t fit, we think their lives are less. That’s not true. Their lives are harder, because we haven’t figured out a way as a society to make them easier, but their lives are not any less valuable. I think Becca summed it up best the other day on a comment she made on Neonatal Doc’s site when she made a profound distinction between support needs (and the severity of disability) with quality of life. She said, “Quality of life is about being loved, valued, cared for and comfortable. How well your body works and what help you need doesn’t factor into it…unless that help is withdrawn or limited in some way.” And for Dear Son, he is loved, valued, cared for, comfortable and happy. That is the best ending. As Jack Nicholson said in the movie, “It’s as good as it gets.”

The MRSA Pneumonia: Part III-A Mother’s Day to Remember

Today’s chest x-ray is worse, as if that were an option. I have never seen a chest x-ray like this one before. It consists of his head and then it’s solid white from the neck down. There are no ribs or anything on the x-ray. It looks like a mistake but it’s not. They have diagnosed him with a MRSA pneumonia and Acute Respiratory Distress Syndrome. I’ll learn in a day or so that he was in septic shock as well. His blood pressure is unstable. They have tried to control it with blood pressure meds but it’s not working. Dear Son’s blood pressure continues to drop. He desperately needs a transfusion. They ask me again, or pressure me rather, and I decline. I have lots of questions and I don’t feel comfortable asking them with ten of them (there is one attending and multiple residents) and one of me. I feel like I am being bullied. I just want a familiar face or at least a one on one with someone. I don’t begin to understand the seriousness of this issue and won’t until a few days from now. If they had presented it to me differently, I might have responded much quicker. In the meantime, they continue the blood pressure meds. His glucose is now unstable as well. They have started him on insulin. His body is retaining fluids in all the tissues. They add the pressure boots to his legs to reduce the swelling. He doesn’t look much like Dear Son anymore. I think his face or jowls, that he has now, make him look more like John McCain. I hate John McCain.

It’s Mother’s Day today. The sun is shining in on Dear Son’s hospital bed and it looks to be a glorious day. Dear Son however looks horrible. He is hooked up from one end to the other. If I were to be truthful, he looks like a corpse with a bunch of attachments hooked up to him. I think to myself that this is not really living and wonder if I am being selfish in wanting him to live or if it’s right that they are saving him. I really don’t know the answer to this. I desperately want to kiss him but am scared of the vent tubing. I look at him up and down and try to find an open spot to kiss him. He’s got IVs in both feet, the boots on his legs, a catheter, his g tube, a central line in his hip, an arterial line in the other wrist, a blood pressure cuff on his bicep, multiple monitors on his fingers and hands, a ng tube out his nose and the ventilator tubing taped across his face. I kiss him on his knee and tell him I love him. I love him so much. It’s really hard to see him this way. In a way, it seems like he’s already gone.

Good Morning America, the weekend edition, is on television. They show a female soldier’s two sons and have the camera on the sons so they can see their mother. The little boy, who appears to be around five or six, is supposed to wish his mother a Happy Mother’s Day. Instead, he begins to cry because he misses his mother. The Pediatric Intensive Care Unit (PICU) nurse sees this part while attending to Dear Son and asks why the little boy on t.v. is crying. I tell her he’s crying because he missed his Mamma and hadn’t seen her since Christmas. I mention that it’s Mother’s Day and suddenly Dear Son’s eyes squinted a bit as if he were trying to open them and finally one eye partially opens and he looked at me. Dear Son’s eyes had been closed for a few days now. He had been learning about Mother’s Day at school these last few weeks so I know he purposefully opened his one eye to wish me a Happy Mother’s Day. That was the kind of son Dear Son is. He’s very loving and adores his mother. The feeling is mutual.

The PICU Attending Doc arrives in the lobby of the PICU. She has lots of bright yellow and pink tulips in vases for someone. One of the staff delivers one of the vases to me and tells me it’s from the Attending Doc. She bought them for all of the mothers on the floor for Mother’s Day. God bless her heart. I am almost in tears now. I have told Dear Son for years that my two favorite things are flowers and little boys. He would always laugh at me. I find the doc and thank her. She says, “I am sorry you have to be here on Mother’s Day but I wanted to bring you some flowers and wish you a happy Mother’s Day”. I couldn’t think of a nicer thing to say to a mother today. This woman hit the nail on the head.

I spend the day praying. Actually, it was more like begging. I begged the Lord not to take Dear Son on Mother’s Day. Of all the days to take him, this would be the worst. I decide that this would be the absolute cruelest thing in the world that would ever happen to me and pray that it won’t come true. I would forever have Mother’s Day as the death of my only son.

I easily remember my first Mother’s Day when Dear Son was only six months old. He had spent three weeks at this same Big Academic Medical Center when he was only ten weeks old and Ped Neuro Doc had taken care of him. He started on ACTH therapy and had improved. I was so grateful for that. I held him in church on that Mother’s Day and tears streamed down my face as they played “On This Day O Beautiful Mother”. I loved being a mother and was thankful that he was alive. I had never felt more beautiful than I did on that day.

The Rounds occur. They tell me it’s a MRSA pneumonia. Not only that, they tell me the x-ray looks worse than yesterday. I can’t imagine how much worse it can look, but take their word for it. I’ll learn later in the week that they had twelve MRSA pneumonias here last year. Seven died. Enough said. I think back to my first day at the local hospital when I asked for the MRSA screen. Why couldn’t they have put this together and figured out it was a MRSA pneumonia? Or at the very least, that they were in trouble? I am angry but let it go. Dear Son is still in big trouble.

The Attending Doc comes in to meet me and asks for the transfusion. She tells me his hemoglobin is 7.5 and they can’t stabilize the blood pressure. I tell her that I wonder how safe they are. She says they are safe but I need more information that that. I ask her if I can donate. She says that would take a few days to test the blood and we don’t have time for that. She says there is only a very, very small risk of contracting Hepatitis C or HIV from the transfusion and that they are safe. I tell her that I won the gene lottery with Dear Son and that if there was a minute chance he would get this gene mutation too. I tell her that I am not a lucky woman when it comes to this kind of thing. I ask where the blood comes from and she doesn’t know. I think she should know the answer to this question, meaning what blood bank they use, etc, etc, but I don’t butt heads with her. She is trying to help Dear Son. She explains that in her country, the doctors can just do what they feel is needed for the patients, and don’t have to ask the parents permission. In America, she says, it’s different. I wasn’t trying to be difficult, it was more that I wondered if a transfusion was really necessary. I tell her I will think about it.

Hours pass and I decide that it’s not worth it to debate this transfusion. I tell her that I’ll sign off on the transfusion and to have someone bring me the consent papers. I decide that it’s more important for him to live than to worry about the transfusion. Also, I really don’t want him to die today. Not on Mother’s Day.

Continued….Part IV-The Conclusion is tomorrow.

The MRSA Pneumonia: Part II-The Rescue

This is part two of a four part series describing Dear Son's MRSA Pneumonia at this time last year. Part I is below.

...

The Air Team arrives. There are four of them-a pilot, an attending and two residents. Just guessing, of course. Still not sure I have done the right thing, one of the residents takes one look at Dear Son and turns white. He comments on how hard he is breathing and administers an oxgen face mask immediately. They also require that one of his antibiotics be changed prior to transport. I am relieved already and begin to relax. This is Dear Son’s fourth air transfer and I know how good this team is. I am always impressed with the way they take over immediately and manage the crisis. I breathe a sigh of relief. This is the stuff the commercials should be made of. Skip the best hospitals stuff-this is when it “really” matters. I can’t begin to tell you what a sense of relief that comes over me when they arrive. It’s the same feeling I get when Dear Son’s in deep trouble and Ped Neuro Doc takes over. These people are good. No, these people are great at what they do. I leave the hospital to meet them there. I don’t have enough gas to get me downtown so I’ll have to stop or I won’t make it.

I leave the hospital and am driving towards the highway when I look up and see the helicopter overhead. This is totally weird. It’s like the scene in a movie, the kind that never happen in real life, but they put it in there to demonstrate the emergency. I can’t believe it’s Dear Son in that helicopter. I feel like I’ve just dodged a bullet. I pull into the gas station, pay cash for my gas and grab a bag of chips while I am there. I get peeved at myself and tell myself that this is nothing more than emotional eating and that I need to put the chips back. I’ve worked too hard to blow it on a bag of chips. I decide that there will be other days to work on this issue and buy the chips anyways. I don’t even like chips. Go figure.

I arrive at the Pediatric Intensive Care Unit (PICU). It’s now 8 o’clock p.m. There are some twenty people working on Dear Son. They have done more in the last hour than the previous hospital did in three days. I still don’t know what’s wrong but I do know this. More people, bigger problem. I’ve seen it one too many times before. I stay in the background offering information only as needed, letting them do their job. They have him hooked up to the Bi-PAP machine, I believe. I don’t really know what a Bi-PAP machine is, however they have it at 100%. They continue to work on him throughout the night. I am getting worried now.

It’s Saturday morning and the furor continues. He’s got IV’s in both feet, a central line in his hip, a catheter, his g tube, an arterial line in his left wrist, monitors on his right hand, an NG tube and they just vented him at 100%. The syringe pumps are stacked so high it looks like a condo tower. I have never seen that many before. It’s not even noon. They work their tails off until 5 p.m. I thank one of the day nurses at she leaves to go home at the end of her shift. I tell her that she did a great job today and thank her for working so hard. She appreciates the fact that I noticed, but she is downright exhausted. They have been working hard since 8 p.m. last night. I look at Dear Son and he’s motionless in bed. They have given him paralyzing medicine to keep him still. I wonder if I have done the right thing. Ironically, I think back to Neonatal’s Docs post earlier this year where we discussed putting plans in place for times like these. I wonder if my decision or lack thereof, is the right one for Dear Son. Am I keeping him alive because I selfishly love him and want him to be around and by the same token prolonging his suffering? I decide I can’t think clearly right now and look at Dear Son and want to kiss his cheek and see his beautiful smile again. I start praying some more that I see it again. I can’t stand looking at him like this.

They approach me again and tell me Dear Son needs a blood transfusion. I am exhausted and overwhelmed and deny their request. I am feeling uncomfortable again. I just need to see a familiar face to ask them about these transfusions. Are they safe? I picture myself forever checking off the box that he’s had a blood transfusion and wonder if it’s really necessary. I try calling our Pediatrician but can’t get in touch with him. Ped Neuro Doc is still on vacation and Ped Neuro Nurse won’t answer her page. I just want to see someone I know. I decide to leave a voice mail message on Ped Neuro Doc’s home phone. I know he’s on vacation but it’s the least I can do.

The nurses come in to suction Dear Son often. I can’t bear to listen to this or watch this. I have to leave the room. I suck at medical stuff-I am much better at the business end of healthcare, meeting with healthcare CEO’s, CIO’s than this stuff. Actually, this stuff makes me nauseous. I ask them to be careful to keep Dear Son on his sides since he can’t roll over and he chokes on his saliva normally. The PICU nurses are great here-smart and hardworking.

I look over at Dear Son again. My mind wanders back to last summer. Ever since Ped Neuro Doc told me he was dying, my life with him has never been the same. I am always wanting one more day, one more smile and one more day to love him. Today’s no different.

Continued...Part III A Mother's Day to Remember

The MRSA Pneumonia-Part I-How It Began

It was a year ago that Dear Son had the MRSA Pneumonia and nearly died on Mother's Day. I thought it might be interesting to repeat this series. This is part one of a four part series.

FYI-I am not sure how I got on this listing however my blog appears on the "Best of the Web" Blog Directory. Cool.

***

It was Wednesday and I had just called Ped Neuro Doc about Dear Son. He woke up yesterday with a high fever and although I was concerned, I thought I’d manage it at home first and see if I could get it under control. I usually do that now, try to manage the situation first, then call later. After all, Dear Son is much older now and it’s not as urgent, or so I’d like to think.

We had done our normal morning routine yesterday, where Dear Son wakes up at the crack of dawn, I get up and put my contacts in and then go in his room to give him a big bear hug and some kisses on the cheek. Dear Son laughs when I do this and pushes me away when he’s finished. I then get his meds and breakfast ready, to get him off to school. This morning was different though. I wrapped my arms around him and his body was so hot that it took my breath away. I was alarmed and shocked. I stepped back and gave him a quick once over. He was not seizing, looked fine and everything appeared to be normal, except for the fact he was burning up. I took his temperature and it registered at 104.3. I figured it must be a mistake so I try taking it again but I keep getting these high numbers. I haven’t had numbers this high since he had his ear infections as a little boy and even then, they might only by 103.5. I decide maybe the thermometer needs new batteries. Since everything seems to be o.k. looking at him, I decide to give him Motrin with his breakfast and call him off school. His teacher informed me previously that some of the kids were sick with some colds but to date it hadn’t affected Dear Son.

Other than seizures, Dear Son is rarely sick anymore. In the last few years, we have only seen the pediatrician for wellness checks. Ped Neuro Doc handles most of our emergencies now in part because they are mostly seizure related and partly because of Dear Son’s special needs. Dear Son has a Vagus Nerve Stimulator implanted and has intractable seizures. He’s a great Neuro Doc and a great Pediatrician to boot.

I had decided to manage Dear Son’s fever myself for a day however when I can’t get control of the fever, I decide to place the call to Ped Neuro Doc. Dear Son is breathing more rapidly now and I am concerned. Concerned about the breathing and the fact that this fever will lower the seizure threshold and I could be in trouble soon. I ask him how he wants me to handle this: go to the nearest ER, go to Big Academic Medical Center or follow up with our Pediatrician, Dr. A. He says to go to the nearest ER. His answer surprises me. Although it’s not a neuro issue, he usually handles all of Dear Son’s emergencies these past few years. I follow his advice. I finish putting on my make up and pack a few things, however Dear Son’s breathing is more rapid. He takes one breath every second. I know this is unusual for him because I go to sleep many nights counting in between his breaths I hear on the monitor-one one thousand, two one thousand, three one thousand, four one thousand, five one thousand, “breathe dammit”, goes through my mind and then suddenly he’ll take a breath and I catch my own. I repeat this scenario most nights so I know for a fact that the one one thousand breaths are not normal. I never sleep until I know that he is fine and breathing normally and not seizing.

I end up calling 911 because he begins to look poor. The paramedics arrive and immediately give him an oxygen mask. They take his history and I hand them the Emergency Information Sheet that I made up several years ago. Ironically, I just updated it yesterday. It includes his primary and secondary diagnosis, all the meds he’s on, what his baseline mental and physical abilities are, how he feeds and just about anything you’d ever need to know, if I wasn’t there or if he was in a school bus accident. I created the sheet many years ago after a severe school bus crash in Fox River Grove, a suburb in our state.

They start an IV and we head for the hospital. We arrive at our local ER, a hospital known for it’s cardiology, since most of the patients here are well paid Corporate Executives with stress related issues due to their job. Dear Son’s placed on oxygen and they start him on Motrin with Tylenol given two hours later, to control the fever. They run labs, including seizure meds and start him on two antibiotics. We assume it’s an aspiration pneumonia at this point. I tell them about the Methicillin-resistant Staphylococcus Aureus (MRSA) and they put him on contact isolation. Ironically, I ask them to run a MRSA test because I keep hoping this MRSA thing will go away so I don’t have to go through this isolation stuff any more. Dear Son was diagnosed with MRSA in 2004, probably as a result of his forty plus hospitalizations, throughout his fourteen years. I won’t know for a few days that asking for this MRSA screen, will be like a bad foreshadowing in a novel. Only it’s not a novel, it’s the real thing.

Dear Son is admitted asap. The Peds floor is dead. I check things out and look at their patient board. Only four patients in here right now. I can’t believe it-only four patients. At the Big Academic Medical Center, you have to wait sometimes up to thirty hours to get a bed on the floor. Usually Ped Neuro Doc gets us in there so we don’t have to wait, but other families aren’t so lucky. I see a beta fish in the fishbowl. It reminds me of home but this fish isn’t as friendly as mine. I remember the salt water fish tanks in the lobby and know they have a service for those but the beta fish? That means that someone has way too much time on their hands to take care of this fish. I ask and find out one of the nurses takes care of it. Proof they have too much time on their hands. I enjoy the fish nonetheless.

It’s now Friday and Dear Son has not improved. He’s still breathing as fast as when he came in and I am concerned. His fever is not under control and goes down only if the Motrin/Tylenol combination is administered precisely on schedule. The antibiotics are not working. The night nurses have suctioned him for five hours straight each night. Because they have a low census, they have time to do this. I am thankful for that. Regardless, this isn’t normal.

I decide to start making some phone calls. Something isn’t right and I don’t like it. I don’t have a very good feeling here and I am beginning to get really uncomfortable. I tend to follow my intuition. They admit him to the Intensive Care Unit today. The ICU at this hospital just means that they hook up a few more monitors, but you stay in the same room. The heart rate monitor is on now. WTF! At the Big Academic Medical Center, they have all of the monitors on all the time, not just in the ICU. I talk to the ICU doctor. He’s nice but has no answers. I don’t need nice, I need to figure out what’s wrong. This Hospitalist system stinks; a new doc comes on board every twelve hours. God, I just hate it. My mind wanders back to Dear Son. He is too weak to continue breathing like this.

I close the door and start my calls. It’s one of those days where I can’t get in touch with anyone. Everything from busy signals to getting disconnected. I finally get in touch with my former mother-in-law, who is now 84 years old. She was an ortho nurse for many years. She reads between the lines and tells me that she knows I am not comfortable there. I tell her that she’s right. I’ve got a gut feeling something is really wrong, I just don’t know what. I call the secondary insurance Case Manager. She’s a nurse who’s worked with me a few years now and knows Dear Son’s case real well. She hears the concern in my voice and decides to make a visit to the hospital. Ironically, Dear Son perks up for her visit and then crashes the minute she leaves. He smiles when she says hello to him but his eyes remain closed. That’s Dear Son for you, always the extrovert. He loves people.

I call our Pediatrician (We had moved out of his service area a few years back but I kept going to him Dear Son had mostly seizures and kept the Ped Doc for wellness visits and lab work.) and explain what is going on. I tell him what they are doing and ask his advice. He says the treatment plan is appropriate however we probably need to have a Pediatric Infectious Disease Specialist at a Children’s Hospital look at him. He said most adult hospitals, including the ones he admits too, can’t handle kids like Dear Son. I hang up the phone and call Ped Neuro Doc’s nurse since Ped Neuro Doc is on vacation. She’s out of the office for two days. Crap. I find out who’s covering for Ped Neuro Doc and call his nurse, “P”. “P” used to be Ped Neuro Doc’s old nurse until the last Department Head stole her away. At least that’s what the rumor mill says. She’s a great nurse, the best Ped Neuro Doc ever had and more importantly she knows Dear Son and I. I explain the situation and tell her that if we get into trouble and need him vented, I want it to be at the Big Academic Medical Center and not here. She tells me we need to get him here now if he’s as bad as I say he is. I don’t know if that’s the case but I just know that I am really uncomfortable and growing more uncomfortable by the minute. It’s now 4:35 p.m. on a Friday night and Mother’s Day weekend. She offers to try to find a doc that will accept a transfer. Because it’s not a Neurology issue, she has to find a Pediatric Doc who will do this. Bless her. A while goes by and Dear Son is breathing even harder. She calls back and found a Peds resident who would accept him but I have to get the ICU doc to agree to initiate the transfer. Without missing a beat, I call him in. I try to think quickly about what I’ll tell him being careful not to upset him. My real thoughts are that we need to get out of here asap because they don’t know what’s going on but I choose to tell him that I’d be more comfortable at Big Academic Medical Center because they know him, blah, blah, blah……He agrees to call them but will only agree to transfer him “if” they have a bed available in the Peds ICU. Dang. I doubt this will be the case but pray nonetheless. Nothing has gone right today so far. I also know that you have to wait thirty plus hours for a regular room, this probably won’t happen. I give him the resident’s pager number and he calls her. He comes back to the room and tells me the Air Transport Team will be here in exactly twenty eight minutes. I pack all our stuff in under five minutes. I can’t believe they had a room but I am ready. I am still not sure if I am doing the right thing but I know that they aren’t moving fast enough for Dear Son and he’s having a really hard time.To be continued...This is Part I of IV Parts. Part II, the Rescue, is next.

No Post

No post until Saturday. I had an orthopedic issue this week that required some urgent medical attention.

Tall, Dark and Handsome

I was busy painting Dear Son’s hospital bed when the show came on. It was “Little People Big World”, the show about two parents who are dwarfs who have four children: one set of twin teenage sons of whom only one is a dwarf, along with two other children, both of whom are normal size. I sometimes watch the show because I find it rather interesting to see the challenges they face as people with disabilities along with the normal family stuff.

Perhaps the two people that interest me the most are the father and his teenage son, who is also a dwarf. The father has great difficulty walking and walks with crutches. It's almost painful to watch him maneuver through the world, especially on business trips. I can only imagine how difficult it would be getting around in a world that’s not exactly made for people with disabilities, let alone little people. His son is fifteen and also a dwarf. It’s interesting to watch him too, he’s still little but still a teenager, which I guess proves the point that you can’t keep these kids from growing up, which is a good thing, in my book.

I was quite pre-occupied with all of the painting when there was a scene where the normal sized teenage son failed to make this soccer team that was an Olympic prep team of some sort. (Sorry for the fuzzy details, it was on in the background.) The father was trying to make his son feel better by giving him a pep talk and then finally offering to make him his deluxe burger. Of course, by making his burger, the son would not feel bad much longer since the burger was so good. I laughed at the father trying to make his son feel better since I don’t know a parent today that won’t do whatever it takes to try and make their kids feel better when they are down. He continued his pep talk and then said something quite remarkable. He said, “Jeremy, I have to go out in the world all the time and I walk into a room and every time I know I will never be the tall, dark, handsome guy in the room and I have to get over it. I have to be more resourceful and look for other ways to impress them.” I am paraphrasing for sure but that was the essence. It was the “every time” that got me. It has to be hard knowing that you are never “the guy” when you walk into the room. Never. It’s not that I didn’t realize he was a dwarf, but it was looking through the world through his eyes, that made me think of how it must be for Dear Son.

I have watched Dear Son through the years and his amazing ability to charm people when he is in a room. I watch in amazement with how resourceful he is. Here is a man who can not talk, can not walk, can not use his hands, can not feed himself, can not use a toilet and yet is never down. He doesn’t sit in self pity for what he can’t do. He doesn’t crawl into a shell when he’s in a room with people. He sees the room as his oyster and he works the room better than anyone I have ever seen in the Corporate world. I often wish I had his talent.

I remember a few years ago when I watched him lie in a hospital bed at Big Academic Medical Center as he watched the flow of people, mostly women come into his room. A beautiful young woman comes into the room to stock the supply cabinet near his bed. He quickly notices the young woman and his eyes “lock” onto her and a big grin comes across his face. She hasn’t noticed him yet, but that makes no difference. He continues to stare at her and she still doesn’t notice. He quickly shifts to Plan B and begins to make loud noises to get her attention. She still fails to acknowledge him so he gets louder. I laugh to myself thinking he is typical of boys in that they will do anything to get your attention, including being loud and drawing attention to themselves, at least at that age. Plan C goes into effect and he leans over towards her and gets louder yet. Finally, she says hi to him and he smiles even wider. Success! He continues to watch her as she now engages in conversation with him.

I think back to the show and his comment. People with disabilities don’t have the advantages that we do and it seems that they learn how to overcome these issues at an early age. Maybe that’s an advantage to being disabled. It takes regular people a lot longer to learn these lessons. Maybe the advantage is that they know up front they are the underdog and they figure out early on their best assests and use them to their advantage. They don't try to win at a game they can't play. Instead, they play the best game they have. In the end they can still win, they can still succeed and they can be very resourceful. Sometimes, they just do things differently, and that’s not only o.k., it’s a good thing. Sometimes, it’s good to be tall, dark and handsome and then sometimes, it’s good to be you. Of course, some kids get it all. Hmmm…maybe Dear Son knew this all along.