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.

Eye on DNA

Dr. Hsein-Hsein Lei has moved from Genetics and Health to her new blog, "Eye on DNA". If you get a chance, be sure to check it out. You can read more about her here.

It’s a Beautiful City

It was over seven years ago, when I lived in a town, that used to compete for the “Nicest City to Live in America” or something like that. It was a big contest where cities and towns would compete for bragging rights over this issue. The winner would not only have bragging rights, but it would be the featured city in a national magazine thus attracting more people to the area. Every year, for at least three years that I know of, the city would compete for this award. They would hold big meetings and plan their strategy for the coming year. The city boasted over 100,000 residents so it was no small endeavor. They would advertise the contest on billboards within the city limits as if putting it out there, would gain them extra points. They would be evaluated on numerous criteria, so careful planning was important.

They had a slight advantage over some other cities, namely money. They were one of some select locations for Riverboat Casinos that provided something like $25 million extra dollars in the budget every year. A couple of years of this extra Riverboat revenue had left them in great shape. They had no debt and a lot of money to spend. Money to spend on trying to win this coveted award.

I remember when they lost too. One year they came in second I believe and vowed to take the crown the following year. The new approach was to beautify the city. They planted so many trees you’d think it was arbor day sixty days of the year. Every street corner was freshly mulched, with beautiful flowers, beautiful trees and clean as a whistle. But they still didn’t win.

I moved out of the area shortly after that, but I had a vision for this contest. I wondered what it would be like if we took the Riverboat revenue and eliminated the hungry people in our town. There was a huge homeless shelter on the far end of the town. I never investigated to see what kind of numbers would be required to feed an entire town but surely that would be an original idea. Can you imagine how cool it would be to say that no one went hungry in your town? No one, not one person was hungry. Now that, would surely be some good bragging rights. But would anyone care? And which would you rather move to given the choice: a city where no one was hungry and they took care of their residents or a city that was beautiful?

I don’t think people think about it much. I donated to this particular shelter regularly and more so during the holidays. I never visited it but would read the literature they sent on the new shelter that was being built and how many more mouths it would feed. I can’t say that I ever knew anyone who was really hungry, but just because you don’t see it, doesn’t mean it doesn’t exist. I guess for me, I always thought of the town investing in the landscaping as kind of superficial. I mean, it was like having a poor family live in a home-they were hungry but had a beautiful yard. From the outside, it would look like everything is fine and on the inside the family would be hungry. A silly analogy of course, but the idea is that there were people in the town who needs should be taken care of first, and then the beautification of the city would happen after that.

Blogging Against Disabilism Day got me thinking back to the shelter and this contest. A lot of the issues facing people with disabilities have more to do with ignorance than people not wanting to provide a service, like a proper restroom for the disabled. I don’t believe hospitals purposely set out to exclude that part of the population but I also don’t think it’s at the top of our minds either. We live in a pretty materialistic world. We advertise in our brochures that we have state of the art technology, the one piece of equipment that no one else has, that we have the best doctors or the best hospitals and yet, simple things, like making sure our patients can get in/out of our facility is on the back burner. And you don’t think that if you advertised the fact that you had facilities that were “accessible” that people would come? Who uses these places anyways?

We want everything today and don’t like it when we can’t have it. We have so much and yet, we really have so little. We don’t take time to help each other anymore. We’d rather put people in a home than to care for them in their own home, because no one really has that kind of time. Let’s face it, it’s not really cool to be kind. Would you be proud if they wrote about your kid like this, “So and so’s best asset, is that he’s really kind.”

I wonder what will happen over these next few years, as the baby boomers age and become more disabled. Will we just put everyone in a home and not let anyone come out? Or will we upgrade our facilities so people can live a good life? Or maybe, we’ll just plant some beautiful flowers and have a great landscape architect design beautiful grounds for the home. I guess if you can’t live a beautiful life, you can always look at one.

Blogging Against Disabilism Day

Dear Son and I were walking through the neighborhood, as we normally did, many years ago. Every day, from about April through November, I’d bundle him up and take him out for our afternoon/evening walk. As soon as I opened the front door, he’d let out a blood curdling scream, to let me know how happy he was that we were “getting out”. We’d walk through the neighborhood and then head over to the walking trail, that ran along the river. The walking trail was a paved path that was set down a bit from the neighborhood, so it was a little bit warmer, an especially nice feature on a chilly fall day. The walking trail meandered along the river and then curved around towards the south end of the neighborhood. We’d follow the loop and then walk back through the south and west end of the neighborhood, back to our house.

Dear Son loved these walks. Every year, we admired nature at the season’s best. In the spring, we’d see the fifty flowering pear trees that lined the path that ran down the center of the neighborhood. I’d talk about how beautiful the trees were, as Dear Son would listen, or so I had hoped. I was never sure how much he would take in, but I would go ahead and describe or comment on nature as we walked through the area.

Sometimes, we’d be joined by a new mother in the neighborhood, who just had her baby. She’d be full of excitement and anxious to show off her new baby in her new carriage. She’d walk with us, on and off for the first few months, until her baby began to crawl or walk and then we’d never see her again. Being in a new neighborhood at the time, this happened a lot.

I must admit I’d be a tiny bit jealous at times, as they all moved on. It was kind of like we were stuck in a time warp, as the world and the neighbors moved on, leaving us by ourselves, walking down a different path, to our own drummers.

On one particular day, we ran into mother and her children. We stopped to talk to the mother and were chatting for a few minutes when her son came up. He stopped, gave Dear Son the once over and said, “What the heck happened to him? Does he have two broken legs or something?” The mother was mortified. I simply said, “No, he can’t walk.” By that time, I knew that a simple explanation was best for that child and I didn’t need to get into any more detail.

I always kind of missed being part of the whole neighborhood thing, at least on occasion, I suppose. It wasn’t that people weren’t friendly, they certainly were, it’s just that we didn’t fit into any of the boxes. Dear Son would never play soccer, he’d never play football and he’d never play baseball. And that’s what kids did in the suburbs.

I suppose in some ways, that’s the story of being disabled. It’s about never really fitting in, never having those normal experiences like everyone else. And that’s the good part. The bad news is when just getting through the day becomes a major event because well, everything is just too hard.

I get kind of envious sometimes, and I think that as a society we are really messed up. Our priorities aren’t in the right place, like a mother whose child is obsessed with looking good at the expense of everything else. Kind of embarrassing. Take for example, our obsession with technology. We can make these seemingly small iPODs that can hold a ton of music for $150 or so and yet, we can’t make a communication device for the disabled that is affordable. Instead, we have cool new communication devices like the Tango, that cost around $7000 or so, at least the last time I checked. No, everything that is really needed it pretty expensive. What does that say about us?

Or, let’s say, these new hospitals we are building. So many beautiful buildings, outfitted with the latest technology and yet, most aren’t built with a bathroom that I can change Dear Son diapers. At fifteen, I need a changing bench to lie him on, with a screen or curtain that pulls around for privacy, in a family washroom, so I don’t have to take him into a woman’s washroom or gasp, go into a men’s washroom to change him. I’ve written about it many times before, that there aren’t bathrooms to change him when we go out or even to the doctor. Heck the last time we went to Big Academic Medical Center, he needed to be changed, and I had to ask for a place to change him. The only place that worked was an examining room, but those were busy with patients, so we couldn’t use them. We were just there for lab work, and I guess, that doesn’t count. I suspect they saw my face turning red as our 2006 billed charges of $400k flashed in my mind and yet, Dear Son wasn’t the kind of patient that could go to the bathroom in their facility, unless it was an admission, then he could be changed in his room.

Dear Son is too heavy for me to lie on the ground, to change his diaper, and he can’t weight bear, so he can’t stand up to use a regular toilet. It would be my dream, to someday, see an ad for a new hospital, with a photo of a handicapped washroom, that I could change him in, as an exceptional feature, something which sets apart that facility from their competition. So many hospitals, have their mission statement posted in the Emergency Room, with something to the effect, “that they treat their patients with dignity”. That is, unless they have to go to the washroom. In that case, only the able bodied are treated with dignity. The severely handicapped, well, you have to figure something else out.

And so I ask you today, in honor of “Blogging Against Disabilism Day” to look around at your medical facility, and see if it’s really wheelchair accessible or accessible for your severely disabled patients. Try to find one washroom in your entire facility, that you can lie a patient down to change him/her. And if you can’t, put in a request a family washroom, that all patients can use, especially for those who can’t help themselves.

*This is a photo I took last year of one of our current walking trails near our home.

Blogging Against Disabilism Day

Welcome to Blogging Against Disabilism Day. Diary of a Goldfish has listed all of the bloggers who have posted today on her site. If you get a chance, be sure to check them out. I participated last year and I must say there were so many outstanding posts that made for some riveting reading. It was my favorite day of the year. I am certain this year will not be any different.