Part II-The Rescue

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

Part I-How It Began

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.

Home

Dear Son was released from the hospital today. He is breathing on his own and appears to be doing quite well. He will continue g tube feeds for a while until it is safe for him to eat via mouth. I will perform the respiratory therapy and physical therapy will be scheduled soon in our home. I still can't believe that he survived this ordeal. I am a very lucky woman.

I am happy to be at home and even happier to sleep in my own bed tonight after sleeping on hospital chairs/beds for almost three weeks now.

Thank you for all of your prayers and continued support. I am certain it made a difference in his recovery. After some much needed rest, I should be back to my regular blogging early next week.

Update

Dear Son is recovering nicely. They removed all of the oxygen last night and he is breathing on his own. His chest x-ray continues to improve. The left lung is still partially collapsed. They continue to feed him via the g-tube and it appears that he will need to continue these feeds until it is safe for him to eat. Ped Neuro Doc says we will be here a few more days. There has been some discussion of transferring him to a rehab facility but I don't have any more information at this time. Thank you for your concern and for all of your prayers.

Update

It's been a long hospitalization. Dear Son is recovering nicely and was extubated on Sunday. Initially it was a little rough but he is doing better. He was moved out of the ICU last night around 11 p.m. and is now on a pediatric floor. I was hopelessly optimistic that we might be leaving in a few days or so, since we are on day 11/14 of our last antibiotic but that is not the case.

Ped Neuro Doc came in today to discuss the hospitalization. He said Dear Son is lucky to be alive because most people don't recover from a staph infection like this one. Dear Son is highly unusual because he didn't get an abscess formation in the chest. The typical hospitalization for this is four weeks and recovery is two to three months. We will probably be here another two weeks. The EEG looked good and other than the fact that we are not going home for a while, things are o.k. Dear Son is easily exhausted as expected and feeding through the g tube. I am not sure when he will be able to feed orally. He is happy though and so am I. He loved listening to Gretchen Wilson today and laughed when her song, "Here For The Party" played. I kissed him a million times on the cheek today which I couldn't do when he had the vent on.

I miss being home.

Update

Dear Son woke up early this morning and was alert and smiling with the nurse when I came back from my shower. She said she was glad to finally get to "meet" Dear Son. She said he had the most beautiful blue eyes and a great smile.

I spoke with Dear Son and played the music on one of the toys that he likes. He smiled and even laughed until he choked on the ventilator tubing. The rest of the day was pretty rough for him.

The Rounds went fine today. Overall, I have been really pleased with they way they have taken care of Dear Son. I can't believe it's been a week since we arrived at the Big Academic Medical Center and I couldn't help but remember how close he was to dying last weekend. I was thankful we made it to today. Today's chest x-ray finally looked a little better. They removed his catheter, one of his two central lines out and they stopped the sedative, insulin and the morphine. The morphine for pain is now as needed. I thanked them at the end of the rounds today for helping get my son back. The fact that he was alert and smiling this morning meant the world to me. I was worried that even if he recovered, he may not be very responsive. They also brought down the vent settings so if he does well today they make extubate him tomorrow. That's the good news.

Overall though, he had an extremely rough day. He cried a lot and kept choking on the tubing today any time we moved him. We had to move him a lot to change the bed, for a chest x ray and to hook up the extended EEG monitoring. There was one scary moment when he choked on the tubing and started to throw up while we were trying turn him on his side. It's a difficult move with the ventilator tubing, IV's, central line, g tube and catheter hooked up. I am hoping he didn't aspirate any of it-there's just no good way to tell since it happened so fast. He was scheduled for the extended monitoring prior to this hospitalization however now it appears that he may be having some seizures. He was exhausted from the slightest movement today.

Dear Son's Dad is staying with him tonight so I can do some laundry and get some rest. I will return to the hospital tomorrow night.

Thank you for your support through this difficult time. It means a lot to me and to Dear Son.

Update III

Things are starting to improve. While the chest x ray is still pretty white, the labs look good. The vent settings were reduced yesterday and Dear Son is breathing over the vent. Both the pain and the sedation meds were reduced as expected with the decrease in the vent settings. It looks like we are on our way in terms of extubating although it is probably still a few days away. He has completed two of the three antibiotics and we are on day 7 of a 14 day course on the third one. He remains on insulin for the time being. He is tolerating feeds through the g tube and the breathing treatments have been reduced a second time and are now every four hours. They have told me that we are still not out of the woods yet, but things are looking good. Dear Son opened his eyes for one second a few times yesterday but nothing yet today. Your prayers are working and are appreciated.

Interestingly enough, there was a special segment on our local news last night about MRSA. They interviewed the Section Chief here at the Big Academic Medical Center. They showed a boy who had recovered from a MRSA pneumonia last year-he was in a coma for two months and hospitalized for five months. Of the twelve cases they had here, seven died. I am a very lucky woman.

During the rounds today, I also asked about the lack of the local hospital to make an appropriate referral here. I actually initiated the referral here because I didn't feel Dear Son was improving and he was struggling really hard with his breathing at the local hospital's ICU. Since Ped Neuro Doc (who works at the Big Academic Medical Center) was on vacation, I ended up speaking the doc's nurse who was covering for him. I explained that I was very uncomfortable at the local hospital, that Dear Son's breathing was extremely labored, that he wasn't getting better, etc, etc. It was late on Friday night and she managed to find a pediatric resident who would agree to take the transfer "only" if the Ped ICU Doc would initiate the transfer. I spoke with him and he said he would agree but only if the Big Academic Medical Center had a bed available in the PICU. I gave him the pager number of the pediatric resident and 28 minutes later the Air Team arrived from the Big Academic Medical Center and saw Dear Son. They changed one of the antibiotics immediately and said he was in distress. By the time Dear Son had arrived at the Big Academic Medical Center he was in respiratory distress/failure and in septic shock. I wanted to know why the ICU at the local hospital didn't make an appropriate referral. The local hospital uses a hospitalist system; there are hospitalists in the ER and also on the Peds floor. At the local hosptial, they have a different hospitalist every twelve hours. I do not like the hospitalist system nor do I belive they are good. When I am sick or Dear Son is sick, I want "our" doctor, not someone who doesn't have any history. The attending physician answered my question by saying that a lot of the local hospitals don't think that MRSA happens in their area and think it's only an inner city issue. The area where I live is one of the wealthiest suburbs which is probably part of the problem-they probably don't think MRSA exists there. I would hope that more hospitals begin to understand MRSA so that appropriate referrals can be made. Dear Son arrived here in the nick of time and I would hope that more hospitals would understand the important health issue that MRSA has become so that this situation doesn't happen again to some other child.

Update

Thank you for all the prayers and comments. It is great to read them throughout the day and very uplifting. They have a pc hooked up to a big plasma screen in the room but it's difficult to use for anything other than viewing things on the pc.

On Saturday and Sunday, they had a lot of issues attempting to control Dear Son's blood pressure, despite adding a medicine to control it. He was so unstable on Saturday that I was rather worried he was going to die on Mother's Day and was relieved to make it through the day. Mother's Day started out o.k. until they did a power check at the hospital and the power was shut off briefly for testing. I wish they would have told me that. My heart skipped a few beats as the power went off and I quickly looked at Dear Son who was still breathing on the ventilator. It took me a minute to realize that it probably had a battery back up. The second thought that entered my mind was what it must have been like when Hurricane Katrina hit with the power going out in the hospitals. I later confirmed with a staff member that I know that it was indeed a valid test of the power.

On Sunday evening, they did a blood transfusion due to the low hemoglobin (7.5). I had many reservations about authorizing this; I don't do this every day and was concerned about the safety of it. The blood transfusion appeared to have stabalized the blood pressure however the chest x ray continues to get worse. Yesterday, the lungs were not visible at all on the xray (they showed it to me) and he was considered a bad stable so to speak. Today's x-ray was unchanged.

During the rounds today, they indicated that this is a MRSA pneumonia. (The MRSA is not surprising-Dear Son has had over 50 hospitalizations in his life and the MRSA was diagnosed back in 2004). From what I am told, this makes it more problematic since he was so sick when he presented and because the MRSA pneumonia will make it more difficult to wean him from the ventilator since Dear Son is not very active (he is bedridden normally). The ventilator settings remain unchanged. They also indicated that we will remain in the PICU for some time. He has also become hyperglycemic as a result of the steroid so they will be keeping insulin at the bedside.

That is all for now. The doctors and nurses here have really done a great job and I am thankful for that.

Dear Son Update

It's been a long twenty fours hours. As I mentioned previously, Dear Son was rushed to a local hospital with breathing difficulties, a high fever and suspected aspiration pneumonia. Dear Son continued to decline, they couldn't keep the fever down and the lungs were getting worse. On Friday afternoon he was admitted to the Intensive Care Unit at the local hospital. Dear Son had been working pretty hard breathing, had not eaten since Tuesday and had been pretty unresponsive. Last night, he was airlifted to the Big Academic Medical Center. The air transport team did a great job and took good care of him. He was admitted to the Pediatric Intensive Care Unit where they have worked on him non-stop ever since. His lungs continued to decline and he was diagnosed with pneumonia in both lungs and Acute Respiratory Distress Syndrome. He began failing despite being put on the BiPap (forgive me I am not a medical professional) and 100% oxygen since his arrival last night. At around noon today he was intubated and put on a ventilator at 100% oxygen. He has three IVs currently (one in each foot, one in his wrist)and a central line was added in his hip this afternoon. His blood pressure was declining and unstable this afternoon. They worked hard until 5 p.m. this evening until they could get him somewhat stable. His Dad is at the hospital now and I came home to get some clothes and will return shortly. I do not have access to a pc there so I will try and update you every few days or sooner if I can.

Thank you for all of the nice comments, thoughts and prayers. Your heartfelt concern was much appreciated.

About Dear Son

Dear Son has aspiration pneumonia and is in the hospital. We will probably be there for a few days. They do not have internet access so I will not be posting anything until he is able to come home. Thank you for understanding.

A Picture Paints a Thousand Words

“You’re different”, I said. Lonnie, responded quickly and urgently, “Nooooo, I am not” he said, as he talked out of the side of his mouth, his speech slurring and the slobber running down his face. “Yes, you are”, I said. And the conversation trailed off and quickly changed. The only difference was that the conversation didn’t have an ending. We didn’t fight over whether it was true or not; I had merely made an observation, as school kids do, and he denied it and that was the end of it. We kept playing some more and soon finished our game, Sorry.

Lonnie was our next door neighbor and a few years older. He had a slim build, blond hair and glasses. His body was all twisted and never straight when he stood. At the end of his legs were these huge metal braces which kept his feet straight and these worn, brown, high top leather boots of some kind that fit over the brace. There were scuff marks on the toes where he would scrap the ground as he dragged his shoes when he tried to walk. He walked with two metal crutches that fit over his arms. The arms were padded so it didn’t hurt. His speech was slurred and he seemed to talk out of one side of his mouth. He slobbered too when he talked. We didn’t really care, I guess. He was just our neighbor.

We placed softball in the street every night. I never seemed to notice that he wasn’t there or that he was never outside. The little yellow school bus picked him up every morning for school and yet, it never once occurred to me as to why he didn’t go to school with us. We thought of him as a cripple, as I recall. That was not derogatory though, it was just the only term we knew of that fit and the only term that was used at the time, almost forty years ago, to describe kids like Lonnie. We never said it aloud to him nor did we spend a whole lot of time thinking about it. It was just the way it was.

Looking back, we really didn’t know anything different. I say we, as in my sister and I, and the other neighborhood kids. We would occasionally go over to his house and play and it really wasn’t any different than what we did at anyone else’s house. I do remember the van though and there was a wheelchair for him. The wheelchair wasn’t used very often, just for transport, and the rest of the time, he used those crutches.

When Dear Son was born, I never gave it much thought. I had no idea of how to care for him really, in terms of the special chairs or devices that would make caring for him easier. Things like a feeding chair would make it a lot easier, but I wouldn’t learn about most of these things until a few years later. Dear Son was three when he got his first wheelchair. I used it for transport and feeding but quickly decided that I wasn’t going to use it much in my home, since having him sit in the chair like a vegetable, seemed like a pretty boring way to spend the day. It also upset me. I liked to let Dear Son play on his back or on his belly and then he would be smiling. I decided early on that whenever he was happy, we were going to do more of that activity, regardless of whether the therapists thought it was good for him or not. He couldn’t roll over so he’d play one way or the other, on a mat or a blanket, or simply in his playpen. His favorite spot, was the French door that opened to the back yard. He would lie there and look out at the pond and listen to the ducks and birdies, that frequented our bird feeder or just catch the breeze that went over his head. Frequently, he would scoot around the floor on his back, using one leg to propel his body forward. It wasn’t that I didn’t like the wheelchair but it just seemed like when he was in it, he looked disabled. Also, when he would sit there, he wasn’t living, he was existing.

I decided early on that I wasn’t going to take pictures of him in his wheelchair. I remember throughout the years, seeing a picture of someone in a wheelchair on a co-worker’s desk, and I always saw the disability and never the child. That is why, in all my pictures of Dear Son, you will never see a wheelchair, unless the picture was taken at school. I learned to get very creative in my pictures, such as taking them in the wagon or a chair or anything with some back support. I wanted people to see Dear Son, not his disabilities. In the last few years, I have had to change though. He’s getting too big and he can’t support himself well enough to sit in a different type of chair and I can’t dead lift him off the ground, so I now use the wheelchair a lot. It’s funny though, because I no longer see the wheelchair, I just see my son. Amazing, how things have changed.

The Silent Champ

We had just started our evening walk, as we always did, with Dear Son in his Red Flyer wagon and me, pulling him throughout the neighborhood. The wagon, was a gift from Uncle Mike, for Dear Son’s birthday, a few months back. The wagon was perfect for Dear Son, because it had a tall back that supported him, since he couldn’t sit up on his own. There aren’t many toys that do this, so this was a wonderful gift. We were heading towards the Riverwalk, which was a blacktop path that ran along the river, that flowed at the far end of our subdivision. The Riverwalk, was the place were the neighborhood boys would fish on the hot summer days and we would sometime pass them on our daily walks. My neighbor, who lived across the street, decided to join us. It would make the time pass quickly and make it more pleasurable as well.

We started walking and soon I became engrossed in our conversation. My neighbor, was telling the story of her mother who had recently come to live with them, because of her mental health issues, which she had all her life. They had become worse recently when her father died, so she took her mother in to live with them. Dear Son sat quietly in the wagon as I pulled him. He loved our walks as much as I did, and loved even more, getting outside. Every evening, he would scream with glee when I opened the door and the fresh air hit his face. By the time we got to the Riverwalk, he would be all smiles and mellow, enjoying the fresh air. He loved the wagon and tonight was no different. At some point, he would get tired of trying to sit upright and slide down into the wagon and laugh a big belly laugh. Then he might toss his foot over the side, secretly hoping his shoe would fly up into the air and I would make a mad dash to catch it. If it fell on the ground, he would let out a big laugh, as he liked to see things crash to the ground. I would laugh with him, teasing him as I would pick it up, knowing full well, he would repeat this game, several more times on our walk.

We had been walking a while when he began to slide down into the wagon. Tonight, he was trying to pull himself into a sitting position, as he sometimes tried, on his own. He had never been able to do this, in all the years of physical therapy, but it wasn’t because they didn’t work hard with him or that he didn’t try. It just never happened.

We were nearing the end of our walk, when suddenly, Dear Son had managed to pull himself up into a sitting position. It was the first time he had ever done this and I couldn’t believe my eyes. I stopped mid-sentence and applauded Dear Son, gave him some hugs and kisses and told him what a great job he had done. Dear Son was beaming ear to ear, he knew he had done a great job and something really special at that.

We finished our walk just in time for one of the Chicago Bulls Championship games. It was a time when the Bulls were in their heyday and Michael Jordan, #23, was their star. It was an exciting time for all of Chicago, seeing the basketball extraordinaire, in action. The newspapers were full of descriptions describing his extraordinary talent as if he were the only person on the team. I must admit I was in awe of him too, since he was so exciting to watch, especially when he would soar through the air as “Air” Jordan. You couldn’t turn on the television without someone talking about his extraordinary talent, making just average, seem like a bad word. I thought about his talent and what made him a champion. He certainly was beyond ordinary and possessed a special drive to be the best. His work ethic and his talent, were unmatched. I thought about what it meant to be a champion and how his talent was extraordinary, far beyond what most people were capable of and far, far beyond the ordinary. He was a champion. After the games, there would be the press conference where undoubtedly someone would ask him about the game and he would answer their questions, sometimes indulging us all with the glorious details. It was a really exciting time.

And then I thought about Dear Son, where it takes an extraordinary effort to do ordinary things. He too was a champion tonight, but it’s not the kind of thing that you’ll ever read in the paper, no matter how extraordinary it was. It’s not the kind of thing he can talk about, because he doesn’t speak. It’s not the kind of thing I can brag about, because no one cares. Their sons and daughters have done this for years and they checked off that box in the baby book, a long time ago.

But somewhere, out there, are lots of little boys like Dear Son, where it takes a monumental effort to do ordinary things. And yet, after three years of hard work, there is no party, no hoopla, no press conference and certainly no newspaper articles. The effort was the same, if not more extraordinary, but the glory was unmatched.

As the years have passed, I saw too, that these were the good times for Michael Jordan, the pinnacle of his career. One on which he can forever look back and be proud, one of the stellar moments of his career. I wondered if he was replaying those moments tonight as the Bulls play in their playoff game. My mind quickly shifted to Dear Son, who is now bedridden, and I wonder if sometimes, he thinks about the good ole days, where he worked for three years and finally was able to sit up in the wagon like a man, a champion. Extraordinary, for sure. Dear Son, the champ.

Eighty

The cards were standing neatly on the large breakfast bar. My mother had read each card to me over the phone as she received it and yet, she wanted me to see each card in person, and read every word again, as proof that she mattered. It was not about the fact that she mattered, really, but the fact that she was remembered. Remembered, by all of her good friends. At eighty, this is what you have.

It was a year ago that she made the big move. She sold her house and moved to the big city. Big Brother, as in my older brother, had purchased a weekend condo downtown a few years back and now owned a few of them; two he rented out and one was strictly for the weekends, when he wanted to get away from the suburbs. Her condo, is a one bedroom and faces south, giving her direct view of the lake, at all times. The floor to ceiling windows in the living room, provide a spectacular view year round, but especially in the summer when all of the sailboats are on the water. The Yacht Club is further down, but still visible, as is the large fountain, that our city is known for. The view, was what sold her on the place. After all, if she couldn’t do anything else, she could sit and look out the window, at this gorgeous view. Big Brother had many conversations with her over the last few years, on how she should downsize and give up her house for something that was smaller. Moving to the city, she would have all of the amenities she needs, under one roof. This would make it easier for her as she got older. We had many conversations around this and she loved the city. She now rents the condo from Big Brother who has a weekend condo several floors above her.

The transition has been hard on her. My mother has been widowed some twenty plus years, since my father died of a massive heart attack, when he was forty-six and I was only thirteen. She’s lonely now, having left all of her neighbors in the suburb and her friends from church. Her friends, many of whom are elderly, can’t get around, and coming to the city, is pretty much out of the question. When she moved, she got rid of her car and her dog so the transition has not been much fun. She misses her flowers, her yard and the birds, whom she used to feed daily. The cardinals were her favorite. None of these things are here though. The closest thing she gets to a cardinal is to view the ceramic birds in her display case or listen to the chirping sounds from her bird clock, that hangs on the wall. Her hands are crippled from arthritis and her fingers point North, East and West when she holds her hand upright. Her feet are a mess and have been for years. She refuses surgery however, which would improve her ability to walk. Other than that, she remains relatively healthy, after having recovered from a Stage 3 colon cancer and several skin cancers within the last five years.

She was excited to see me. I baked a cake and brought several gifts with me, that I thought she would like. I brought Dear Son along too and as a special surprise, my ex-husband, who the family still loves because he continues to take good care of Dear Son and me.

My brother and sisters however, were busy with their own lives, and hadn’t called or made arrangements for the big day. At eighty, you don’t know how many days you have left, so every birthday becomes important. Every time someone dies, I listen for their age and when it’s seventy five or more, I cringe because I know that one of these days, I won’t be so lucky. My mother is not worried about her impending death. She tells me her mother lived well into her nineties, so she is content she will do the same.

My free weekends, or the weekends that Dear Son spends with his Dad, are typically spent with Mom. I take her out to the grocery store and we go to lunch mostly. If the truth be told, I would love to do much more however she can’t walk and getting out at all, is becoming more difficult. She can’t walk and is adamant about not using a wheelchair. She uses a cane which does not provide the support that she needs. Our visits usually begin when I pick her up to take her grocery shopping. I take care to open the car door for her and our ride to the grocery store is not more than fifteen minutes. Once we arrive at the grocery store, she stops at the bank and then begins to shop. Typically, about thirty minutes into the visit, her feet begin to hurt and she has trouble standing. When this happens, it means that she’s going to be cranky to everyone because her feet are hurting. I hate this part. She checks out her groceries and attempts to use her debit card. Without fail, she can not slide it through the machine because her fingers are so crippled that she can’t grip the card evenly. The cashier, trying to be helpful, will give her some verbal tips which do nothing but upset her even more. She wants to be independent and yet, there are some things she can no longer do. The cashier continues to give her tips before taking the card and running it through herself. We repeat this exercise every two weeks or so.

I learned more about my mother in these fifteen minute rides than I have in the last forty seven years. These weekends though, I have come to enjoy. While I often hear the same stories, it’s the background or what’s behind them that makes them interesting now. I also have a good dose of reality of what it is really like to get old. She is quite lonely, as many of the people that are her age. It seems to me that most people can get around pretty well in their seventies, but once you hit eighty, the world takes on a whole different scene. Even the smallest tasks, require monumental effort.

So, today, was her 80th birthday. We spent a few hours with her and then it was time to leave. We said our goodbyes and she moved back to the sofa, where she would sit and stare at the lake, until the next time, I would come to visit.

High Deductible Medical Plan Review

I have just finished the first four months of a High Deductible Medical Plan. Since there is always a lot of discussion around this type of plan, I thought I would share my thoughts with you

To give you some information, Dear Son is covered under a High Deductible Medical Plan via my ex-husband’s employer. There were two plan options to pick from: Option A-a medical plan with minimal benefits or Option B-a High Deductible Medical Plan with more benefits. We chose Option B. I should also tell you that despite all the handouts from the employer promoting this plan, once he was enrolled in the plan, it has been virtually impossible to get information; it’s hard to get information from the employer, the insurance company and just about the plan in general. I admit I don’t know much about these plans however I should tell you, that I probably have more experience than a lot of people with medical benefit plans, for reasons I won’t explain here. I should also tell you that my ex-husband helps out a lot with supporting Dear Son but the medical expenses of the last few years have left us both struggling.

Dear Son’s medical needs include: six seizure meds (he has intractable seizures and a VNS implanted), two GI meds, uses a thickener for liquids to prevent aspiration (he aspirates liquids when he drinks), has a feeding tube, wheelchair, AFO’s (leg braces) and is incontinent. He can not walk, sit up, roll over, talk, go to the bathroom, feed himself and his hands/arms do not work so he can not get himself a drink or hold a glass. He is dependent on me for all daily needs.

Here’s what I have learned and experienced so far:

• High Deductible Medical Plan-The concept sounded o.k. The plan was the employer and employee would both donate money into a Healthcare Savings Account, also known as an HSA. The money they would both donate would cover your “high deductible” and after that was met, the plan would pay 90%.

• Reality: Yes, the employer donates money however in his case, they don’t donate it all at once. The employer staggers the donation. Also, the employee is allowed to withdraw money up to the amount that he has contributed to date. If your expenses go over this amount, you can write yourself a check for the amount you coughed up when the money is available. Follow along and I’ll explain when I get to pharmacy, how this is a problem.

• Benefit-Durable Medical Equipment-The new limit is $2,000 a year. In his prior plans, there was not a limit for DME.

• Reality#1: Dear Son needs a new tilt wheelchair at a cost of approximately $10,000. The plan doesn’t come close to meeting his needs.

• Reality #2: Dear Son’s leg braces (AFO’s) cost approximately $2,200/year.

• Benefit-Private Duty Nursing-In the past, we have had Private Duty Nursing, up to $1,000 per month as a benefit.

• Reality-There is no coverage at all. Who can help me with Dear Son’s needs as they get more demanding?

• Pharmacy-This was by far my biggest headache to date. The materials state that you can use a mail order pharmacy to get a discount on the prescription drugs. They also give prescription drug calculator to figure out the costs and show you how much it would cost for a prescription. For example, if you want to look up a drug, you need to know the name, strength, and quantity per month.

Under the PPO plan, I paid $20 for a one month supply at a local retail pharmacy OR $20 for a “three” month’s supply via the mail order plan. This is how all of the mail order plans have worked in the last ten or more years that I have been using them. You pay a one month co-pay for a three month supply of medicine.

So, let’s illustrate what happened to me using one of Dear Son’s seizure drugs, Keppra as an example. When I did the prescription drug, estimator, I typed in Keppra, 500 mg, 120 pills and the cost was $355.53 for a “one” month supply at a “retail” pharmacy OR $253.90 via the mail order program.

So, what I thought would happen was that my cost would go from $20 to $253.90 with the mail order plan for a 3 month supply OR I would pay $355.53 for a 1 month supply at the local pharmacy.

• Reality: What really happens is that you pay for all three month’s worth of medicine. So the cost for this one medicine was really $830.24. What they don’t tell you in the brochure, is that with the new High Deductible Medical Plan, you pay for “three” months worth of meds at a “discounted” price.

To illustrate, in 2005, I paid $141.00 for three month’s worth of all nine medicines. In 2006, those same medicines cost, $3,193.07.

This was quite a surprise. I thought they were going to cost, $995.79 and they were really going to cost $3,193.07. My actual costs were actually a little higher due to some increases in the medicines. I also learned, that it was cheaper when you used the correct strength of a medicine. Let’s say you were using a 500 mg tablet but your doctor increased that amount over time and you were taking 1000 mg in the morning and 1500 mg in the evening. It would be cheaper to purchase 1000 mg tablets and then cut one of the pills for the 1500 mg.

Now, once I figured out how much these were going to cost, I had to go back and re-calculate all of the meds based on the amount of money that was going to be AVAILABLE in the plan.

What I ended up doing, was counting out pills for each of the medicines and staggering when I submitted them. Ped Neuro Doc also generously helped out by giving me samples of two of the most expensive drugs.

It also affected how the physician did his job. When Dear Son was having more seizures, we had to work together, to figure out which meds he could increase based on which ones I could afford. I don’t want to start getting in the way from how he practices medicine. I want him to recommend what is best for Dear Son, not have to second guess every medicine change based on this health plan.

What I learned:

1) If you can avoid the High Deductible Plan, do it. Pick any other plan, if you can.
2) Watch out for the pharmacy.
3) HAS’s really benefit the employer. Flexible Spending Accounts work much better but those are not an option under the High Deductible Medical Plans. The reason that I prefer FSA’s is because when you put money into your account, you can deduct the entire amount on the very first day of the plan. Let’s say, for example, you donate $2000 of your wages in an FSA that will be deducted in 26 pay periods. On January 20th, you have an bill come in and you owe $1800. With an FSA, you can pay $1800 out of your FSA on that day. With an HAS, you can only withdraw the amount that has been deposited in your plan.
4) The benefits are a LOT less, at least in my case.
5) This plan is better than no plan but it does not in any way that I could tell, benefit the employee or consumer. This is strictly, employer driven.

I should also mention that proponents of these plans say that the purpose of these plans or insurance in general, is to protect against catastrophe and yet I am not convinced that these plans do this at all. These plans are also very different than the PPOs we have had previously. This plan BARELY meets Dear Son’s needs. If it doesn’t meet his needs, then who exactly is this plan designed to cover? I mean, the plan has ZERO private duty nursing. Does that sound like a plan that will cover catastrophic illness? The plan has a $2000 limit on DME? Does that sound like a plan that will cover catastrophic illness? And what about pharmacy? In a catastrophic illness, chances are you will need drugs and a lot of them. They will be expensive, there won't be generics and you will need them now. So how, will this plan benefit these people? Yes, once the deductible is met, then you pay your portion until you hit the stop loss, but really, how do you pay for that if you are on disability due to a catastrophic illness and you are getting only 40 or 60% of your salary?


So, my question is, why should people choose this plan? How can we pay for all of these services? Yes, I do have a secondary medical plan that is helping with some of these expenses however THEY contacted me and told me I should consider Medicaid because it offers private duty nursing, wheelchairs and prescription drugs have no co-pays.

So, who is this plan designed for? Someone who doesn’t have a medical condition, or are we just trying to drive people to Medicaid?

"Dream Mom" named Blog of the Week at Genetics and Health

In case you missed it, Dr. Hsien-Hsien Lei of Genetics and Health , named Dream Mom, blog of the week. Her blog is focused on helping you take advantage of the genomic revolution.

In the post, “About Dear Son”, I describe Dear Son’s diagnosis, and more importantly, the Aristaless gene, or ARX for short, that was responsible for his disabilities. Dear Son, was the first person in the world, to be diagnosed with one of the three patterns of the gene. I talk about how it was diagnosed, and include links to the geneticist, testing labs, and the original paper that was published in published in the November, 2002 issue of Nature Genetics. I hope this post raises the awareness for medical professionals, particularly pediatricians and neonatalogists, since they are at the front end of process, about the Aristaless gene or ARX as it is known. My post also defines the types of children, that should be tested for the gene.

I can’t begin to express my gratitude for this. I wrote the post, “About Dear Son” to illustrate how important it is to the parents, to finally know what caused their child’s disabilities. We live in a world where people are quick to take credit for all of the brilliant things that their child does and when a child is born with severe disabilities, you can’t help but take it personally, even if you did nothing to contribute to them. As a parent, your life is forever changed by this child and yet, your love for them knows no boundaries. I know first hand what a huge burden was lifted off my shoulders, when I found out what caused my son’s disabilities, and also when I found out it occurred at random, which is not always the case. I hope you will share this link with whomever you think would benefit.

Thank you, Dr. Hsien Lei, for all that you do.

Magazine Envy

My heart beat a little faster today after I went to the mailbox. Enclosed, was the May/June issue of Veranda. It was the first issue of my subscription but more importantly was the beautiful cover, done in creams, whites and pink, my favorite color.

I have always been fascinated with houses. I am not sure where this obsession came from, but it’s been there for as long as I can remember. I was a young teenager when I spent the summer building our house with my father. The whole family would take a six week vacation to Idaho; most of the family stayed with my Aunt and Uncle at their home and my father and I used to stay at the house we were building. Dad had spent twenty some years in the army and had been out for a few years now and was building this house for us. He drew the blueprints up himself and had done just about everything except the electrical work. We would never live there though-he died a short time later and the house was sold.

I have a couple of homes in my dreams. I designed all of them and each have certain things that love. There’s the City Home that looks over Lake Michigan, high in the sky. This home would have a southern exposure which would give me great view of the lake plus some of the city’s skyline. The drapes in my living room would be done in a deep orange silk taffeta, the color of rich coral, and would puddle on the floor. The color, would be a perfect contrast to the aqua blue color of the lake and make it pop. It would have a cream sofa, done in a textured fabric, along with maple hardwood floors and a custom patterned rug. It would have Waterford crystal lamps, with the pineapple base, that would flank the sofa. The highlight of this home would be the deck or outdoor space. It would be loaded with all kinds of white and peach geraniums, along with white furniture with a blue and white ticking for the covers. There would be other beach momentos out there, perhaps some old country signs and a table for those cool summer drinks. There would of course, be some kind of chair that rocked, even if it wasn’t a rocking chair, and of course an ottoman, to put up your feet. There would be seating for two and that’s it. Just enough to have some conversation, but not too many chairs that you attract the whole neighborhood. One of the highlights of the summer would be the fireworks over the lake, only to be outdone by Venetian Night, which is where all the sailboats are decorated in lights for the evening, and circle the lake. I would spend my days watching all of the brightly colored sailboats out over the water, doing nothing mostly, and then fall asleep dreaming of spending a romantic evening walking along the sand with someone I love.

The Country Home would have lots of acreage. It would have a name of course, on a wrought iron sign at the far end of the property. You would drive up a long winding road to the main house. Along the driveway, there would be giant lilac bushes that would ambush your senses with the magnificent color and sweet scent drawing you closer to the main house. It would include wide expanses of a perfectly manicured yard that looked out as far as the eye could see. Throughout the property, would be the flowering crab apple trees, some with white and others with pink blossoms. On the far outskirts of the property would be a white railed country type fence, the kind with three long horizontal beams that go across between posts. At the end of the yard, there would be some large weeping willows, trimmed straight across, which would surround a beautiful pond, that was only visible, if you walked out that far. There would be a cutting garden of course, filled with row after row of roses, my favorite flower, all ready for me to cut and place in every room of my home, but especially on the dressers near the bed, so that I could smell them every morning, as soon as I woke up. There would be an organic vegetable garden too, so that there would be nothing but fresh vegetables, an herb garden and some pumpkins too, so I could have a spectacular fall harvest display. A lap pool would grace the south side of the house, for the occasional visitor that swimmed. A brick paver pathway would meander throughout the property making it accessible for Dear Son, and on the one side, a large wooden swingset, for him to swing on. A large pink Rose of Sharon bush would sit next to the swing set.

You would be enticed to come indoors by the sweet smell of hot baked bread or fresh tollhouse cookies, all baked in my AGA stove. With several ovens, I could make some or all of them, along with fruit pies or fruit crisps, all made with the organic fruit from my own trees in the orchard, that also resides on the property. The kitchen would feature painted cabinets and lots of bead board, and of course a farmhouse sink that overlooked the large yard. The drapes above the sink, might be done in a toile fabric, complete with children or flowers in the scenes. It would include a huge pantry, for all my canning jars and supplies, as well as for my canned goods.

The Country Home would also include 5 inch wide plank wooden floors, in a light stain that would contrast with the white covered furniture that would be throughout the house. There would be a large fireplace, used every day in the winter, and home made quilts, one of which the cat would curl up on, and make the house look real cozy. There would be large windows in every room that would let in lots of light during the day and those cool summer breezes at night. The bedrooms would be simple in design, most likely white walls, with beautiful simple fabrics covering the windows, all of which were washable. The guest bedrooms, would be covered in brightly colored pastel fabrics, like the pink and white room, shown above. The bathroom, would have a claw foot tub and a pine three drawer chest or armoire, to store the all white terry cloth towels as well as hold the candles and the pastel colored bath salts, all requirements for a wonderful soak in the tub, which would look out over the property. The highlight of the Country House, would be it’s large porch. There would be a large front porch, complete with a bead board ceiling, a painted front porch floor, a ceiling fan and a porch swing. There would be French doors from both the living and dining rooms, that would open up onto the porch. White rocking chairs would sit on both the front and back porch and of course, pots and pots of gorgeous flowers. Near the back porch, would be all of the herbs, so that they would be close to the kitchen, for cooking.

Of course, I would have a Main House too, located in the suburbs, but that will have to be a topic for another post. For the time being though, unless I win the lottery, I will have to just look at the magazines.

There’s No Place Like Home

I was sitting in Dear Son’s hospital room as he lie sleeping in bed. It was approximately 11:20 a.m. and I was just getting ready to go down to the restaurant, which was located on the second floor of the adult hospital, to get a salad, when I heard the little boy go by. The little boy appeared to be about eight years old, was black, with a cute face and big brown eyes. He was sitting fully dressed on one of the hospital beds and was being wheeled down the hall by two uniformed men. His plastic bag, with the children’s hospital name on it, was at the end of the bed and contained all of his belongings. “You need to call my Momma,” he said. “Please, just call my Momma and she will come and get me.” “Where are you taking me?” “I want to go home.” His eyes were filling with tears and he could sense something was terribly wrong, but his Momma would fix it if they would just call her. His cries became more urgent and quicker and the two men pulled the bed down the hallway even faster, so as not to disturb the other patients, or children as they were, in the hospital rooms. “Please, just call my Momma!" he cried, “She will come and get me.” The little boy pleaded and pleaded with the men but they refused to look at him and said nothing.

It was quite disturbing to witness and I couldn’t get him off of my mind. A minute later, one of the sitters came in to relieve me, so I could go down to get my lunch. She sat with Dear Son on many hospitalizations, as was required, for the 24 hour video EEG monitoring, when I needed to get something to eat or to run home to do a load of laundry. I asked her what she knew about the little boy that just went by.

She told me his mother had signed papers this morning and he was being taken to a group home of some kind. I don’t remember her exact words because I was so shocked by the situation. It appears that he was mildly disabled and his mother couldn’t care for him. Apparently, there were both physical and mental disabilities, neither of which were apparent to me, as they wheeled him by. He was definitely not going home today, or tomorrow, or ever. Then she said something, that I will never forget. She said, “his mother didn’t tell him”. As hard as I could, I could not forgive her for this. I would like to believe that he was going to a better place but somehow, when your mother doesn’t want you and she breaks your heart, I don’t think that any place will ever do, no matter how nice it is. And not telling him, well it just doesn’t get any worse than that. I knew deep down, that this boy would re-play this scene over and over again in his mind, for the rest of his life, wondering, what he could have possibly done wrong, for his Momma to give him away.

So it happened again yesterday, at the grocery store. I was shopping with Dear Son as I occasionally do, pushing his wheelchair with my left hand and pulling the shopping cart with my right hand. When I was checking out, the cashier, who has seen me before, asks me again, “What are you going to do with him when he gets older?” It’s a question that is asked often when I am out in public and more frequently when they view me lifting him in/our of the car and into the wheelchair. They notice that not only can’t he walk, but that he can’t help me at all.

I am never quite sure what the quick answer to the question should be. In fact, I am not even sure I know the answer to the question. The fact is, I don’t know how I will manage him as he gets bigger but I do want to care for him for the rest of his life. I also pray a lot at night. I pray for the mental strength to handle whatever comes my way and the physical strength to lift him. I pray for a lot of other things but those two are usually at the top of my list.

I also know that these are well meaning people that are more curious than critical. If I were speaking with them one on one, I would ask them if they could give up their child. Most people could not do that. But it’s ironic how often we ask mother’s or parents of disabled children, this very question. It’s ironic how often the first thing to come into people’s minds, is to give these children away, or put them somewhere, as if they are disposable. They are not disposable because they have handicaps. They are not disposable because their parents are poor. They should not be given up because it’s hard. But the reality is that it is very hard to care for them. And exhausting.

What we should do, is work on making things easier for disabled children and the people who care for them. This benefits everyone. Here’s what we can do:

• We need to have daycare facilities that take all children, regardless of their disabilities. While legally, they can not discriminate, they often won’t take them. They don’t make money on kids like that, even if they had employees trained to care for them. Daycare for disabled children, is practically non-existant. We need to do this so these parents can work and take good care of their children and themselves.
• We need more Respite care so when their parents are tired, they get a break.
• We need to require hospitals or medical centers that have specialty physicians who care for these children, have suitable rest rooms so we can change them on a bed instead of on the bathroom floors.
• We need to have assistants located in the parking lots of our medical centers, so they can help us lift the children in/out of the car, making it easier, instead of paying people to say hello to us when we come for an outpatient visit.
• We need to allow parents to save tax free in a 401(k) for their disabled children’s retirement, in addition to their own retirement, so the children/adults will be less dependent on Medicaid, Medicare and other government programs. We also need to provide for medical withdrawals, based on need, for these 401(k) plans, in case of catastrophic medical bills. We could do this very easily, by using our current Social Security definitions of a disability, as a requirement for the new 401(k).

There are lots of other things that we can do, but if we start with these, then maybe, just maybe, the kids can go home, and sleep in their own beds tonight.

I’ll be home for Christmas…

It was 10:42 a.m. on Monday morning and I had just received another call from school regarding Dear Son. He had been vomiting again and I needed to pick him up. Just last week, I had just been called by the school for the same issue however they had taken him by ambulance to the nearest hospital and he was later released. Here it was, only 72 hours later, and the issue was repeating itself for the umpteen time this year. I wondered how I could continue to work until this issue was resolved, but more importantly, how much longer Dear Son could endure all of the vomiting.

Dear Son had been hospitalized nine times this year, four of which were for vomiting. The year had started with uncontrollable seizures that were difficult to stop. I woke one morning hearing Dear Son gasping only to find him seizing. It was 5:30 a.m. and the seizure was escalating fast. I carried him into the kitchen and set him on the floor while I called 911. There was no time to do anything else and I needed to hold him to keep him from choking on his tongue. I called 911 and tried to give them the information as quickly as possible however the seizures began to get more and more violent. Soon Dear Son’s arms and legs were bouncing off the floor and I struggled to remain calm and give them the information. I already knew the routine. The security at the apartment complex would unlock the secured access allowing the fire trucks and ambulance to access my building. The paramedics would arrive, take Dear Son in the ambulance, start an IV and then transport him to the nearest ER. At the ER, they would give him some seizure meds to stop them or if the seizure had subsided, run labs and then administer the seizure meds. There was no time for that. I needed seizure meds stat. I began to cry while I waited for them. It was the first time I had done that, in all these years.

The paramedics arrived and took Dear Son to the local hospital. He was still seizing violently so they administered the seizure meds stat without installing the breathing tube first and the airways collapsed. It was now a Code Blue and a crowd of people had gathered to watch this life saving event. Only, it wasn’t an episode of ER, it was my son. I prayed for him but couldn’t watch. Soon the transport team arrived and he would be airlifted to the Big Prestigious Academic Medical Center.

That was how the year started. After that event, I would be given Diastat (a kind of rectal Valium) to administer at home, in case of such emergencies. In May, we would implant a feeding tube to make administering the seizure meds easier and from September on, he would be hospitalized on and off for this vomiting.

It was early December and Ped Neuro Doc had just admitted Dear Son for his tenth hospitalization this year. It was critical to locate the source of this vomiting because he had just been re-scheduled for his surgery to implant a Vagus Nerve Stimulator (VNS) due to the intractable seizures. The surgery had been cancelled once, due to the vomiting, and time was running out. Dear Son had met his stop loss for the year and the surgery, if it was done by the end of the month, would be paid at 100%.

The vomiting continued at the hospital. Several specialities were called in to diagnose Dear Son. We had Neurology, Pediatrics and GI to name a few but we were not making any progress. Each morning, I would feed Dear Son his oatmeal, and some time later, he would vomit his breakfast. This would continue over and over until he no longer wanted to eat. Dear Son was getting weaker by the day and losing weight rapidly. Each week, a new attending would come on service and there would be a new plan of attack. I was getting frustrated with the physicians since each specialty had their own plan, none of which made much sense.

Dear Son had stopped eating. It was now only a few days from the new VNS surgery date. I stayed with Dear Son 24 hours a day, as I always did. I worried he was hungry. He was getting terribly thin; he was slim to begin with so losing more weight was troublesome.

A new plan was agreed to and soon the Neurosurgeon agreed to implant the VNS. The surgery went well and the Neurosurgeon came by daily, long after he needed to, to check on Dear Son. The vomiting issue had not been resolved however Dear Son had stopped eating several days ago and I now had a bigger issue on my hands. Pediatrics wanted to release Dear Son so we could go home for Christmas. They had not solved the cause of his vomiting, Dear Son wasn’t eating, he had lost 10% of his body weight and he hadn’t had any food in ten days. I told them it was irresponsible and that we weren’t leaving until they knew the cause of the vomiting and until Dear Son could eat. Frantic, I asked the nurse to page Ped Neuro Doc but got no response.

All the physicians had left for Christmas and only the residents remained. I had been coming here for years with Dear Son and knew we were in trouble. Dear Son was fighting for his life and nearly comatose, in my opinion. I demanded they start some IV nutrition. It was Friday night and with everyone gone, there was no one there to determine how much nutrition he should get. I fought with them and they stalled. Christmas morning arrived. I called my church, crying once again, and asked them to pray for Dear Son. Dear Son lay still on the bed, looking helpless and frail. I prayed for him some more. Tired and hungry, I left the room briefly in search of something to eat. The restaurants were closed for the day, so I quietly chose a ham sandwich out of the vending machine, because it was the only one left. My memories of every Christmas would re-play over and over in my head, along with all the memories of Dear Son. I had hoped he would make it through.

Christmas and New Year’s passed and I continued to pray for answers. It wasn’t until early January, that a radiologist would locate the cause of the vomiting. A surgical nurse had installed a too large feeding tube just three months ago that had blocked Dear Son’s stomach opening hence the vomiting. Not only did it block the tube, but it had scratched the back of the stomach thus irritating his poor stomach, that much more. My heart ached for my son and all he had been through. Finally, 32 days after he was admitted, we came home.

*Note: The picture is of Dear Son just a few days after being released from the hospital.

Word Cloud

Thanks to Fat Doctor for the nice link to the Word Cloud. My Word Cloud is pictured here.

About Dear Son

We had many discussions around the children. Not all at once of course, but peppered throughout our three and one half year courtship, conversations of children would come up. We had both wanted children and had talked about how we would get married, get a house and then start our family. I was a June bride and we lived in a duplex after we were married. Eleven months later we bought our first home. We worked together for a few years after that waiting until we had enough money, or so we thought, to start our family. Five years after we were married, I was pregnant with Dear Son.

Dear Son was born via C-section due to his large size. He was the product of a full term birth with Apgar scores of nine and nine. This was the first and last time he would score well on any standardized test. Over the next year and one half, Dear Son battled seizures and a host of issues that came along with them. I replayed the pregnancy over and over in my mind, to try to figure out what went wrong or how this could have happened. Interestingly enough, there were two other babies within a ten mile radius of us who had baby boys with severe seizures. I know this because the hospital where Dear Son was being treated, shared the names of these parents with me, both of whom were patients of Ped Neuro Doc. At times, I wondered if there could possibly be environmental factors that may have contributed to his issue. Other times, I would replay everything I ate during the pregnancy, wondering what could have caused Dear Son’s issues. I never drank during any part of the pregnancy, and if the truth be told, I rarely if ever drank. I had never taken recreational drugs in my entire life so I know that wasn’t a factor however wondering what caused Dear Son’s disabilities would often hover in my brain like a dark cloud over a beautiful garden.

When Dear Son was a year and half, I had my tubes tied. Not knowing what caused his disabilities, I was not willing to take a risk with a second child. We had genetic counseling and since Dear Son’s condition was of unknown etiology and there was no family history, that the odds of having another child with a disability was very small, although a little higher than the average population.

Perhaps one of the things that bothered me the most was “not knowing” what caused Dear Son’s issues. I prayed for answers.

In December of 2002, when Dear Son was eleven years old, my prayers were answered. One of the geneticists, who had recently discovered mutations in the Aristaless Gene, also known as ARX, was doing rounds during one of Dear Son’s extended hospitalizations. His research paper, “Mutation of ARX causes abnormal development of forebrain and testes in mice and X-linked lissencephaly with abnormal genetalia in humans”, had just been published in the November, 2002 issue of Nature Genetics, Volume 32. Upon a review of the health history, he noted that Dear Son had infantile spasms in the neonatal period of unknown etiology. He asked a few more questions, reviewed the clinic notes from Ped Neuro Doc and asked if he could test Dear Son. Dear Son was tested and tested positive for one of the three patterns of the gene.

Dear Son has Partington’s Syndrome, which is characterized by seizures, dystonia (movement disorder) and mental retardation (Dear Son is severely retarded.) While Partington’s Syndrome is not rare, his was caused by a mutation of the Aristaless gene or “ARX” gene for short. There are three patterns of the gene and Dear Son was the first person in the world to be identified with the first protein pattern, which is one of the three patterns of the gene. People with ARX are also born without any GABA. After his testing was completed, a Dear Son mouse was created to learn more about this gene pattern. The ARX gene expresses itself in vitro and while it is considered a “mild” gene defect as genes go, it can cause some of the most “severe” disabilities. This gene discovery was considered a major gene discovery and initially was thought to rival Fragile X Syndrome. Dear Son was tested for a mutation of the ARX gene because he had infantile spasms of unknown etiology, myoclonic seizures, mental retardation and dystonia, so they thought he might have ARX. Since this gene is X-linked, I was tested, but I did not have the gene; hence Dear Son’s ARX mutation occurred at random.

At the present time, Dear Son has intractable seizures, a Vagus Nerve Stimulator (VNS), is on six seizure medicines which I administer four times a day, and two GI meds. The ARX gene appears to have a GI component to it, but not much is known at this time. He has a feeding tube that is used primarily for meds at this point. He has no language and is not toilet trained.

Dear Son has endured numerous hospitalizations, including many in 2004 at which time he never fully recovered. In August of 2005, his pediatric neurologist, who has followed Dear Son since he was two months old, informed me that he has a degenerative condition. At his peak, Dear Son could walk with a gait trainer or on his knees. At the present time, he can not sit, stand, walk and for the most part, is bedridden.

Since the gene was discovered, they have identified additional cases. Unfortunately, the bulk of the new cases fall into the other other two patterns of the gene and only four to five additional cases are known that are identical to Dear Son.

If you would like more information on the Aristaless gene, or ARX as it is known, it can be found on Pub Med. I have yet to find this information anywhere else.

As a Public Service Announcement, I have asked the geneticist for some additional questions that you may find helpful:

Who should be tested for ARX?
“Infant boys with (1) infantile spasms, (2) atypical spasm-like seizures in infancy plus mental retardation(MR), or (3) MR with involuntary movements from early infancy. Older boys with (4) MR and involuntary movements, (5) older boys with MR and seizures, (6) girls with agenesis of the corpus callosum and seizures, and (7) boys with the XLAG syndrome (XLAG = X-linked lissencephaly with abnormal genitalia).”

How many boys have been identified with ARX to date (all three patterns)? Of that number, how many have been identified for each of the three gene patterns?
“More like two gene pattens. For the severe malformation (XLAG), it is about 30. For the infantile spasm and related group with no apparent birth defects, we are putting a paper with ~7-8 together, which when added to maybe 20 in the literature is also ~30. But this is growing fast. We are putting a paper together of ~5-6 boys with the identical mutation as Dear Son.”

*Note: If you would like any additional information, please e-mail me with your information at dreammom90@yahoo.com and I will respond to your request.

Photo is of Dear Son, age 11.

*On 10/26/06 I met with the geneticist. The Partington's Syndrome was dropped from his diagnosis and the new diagnosis is simply called, "Cryptogenic Infantile Spasms caused by the ARX mutation". You can read more about his visit here.