I have been gone for some time. As I wrote on Day 57, Max was not feeling well. Cold, fever, congestion. On January 1st in the early evening after appearing to me to be feeling a little better, asking on his talker to do much of our normal routine, he got worse. After a bath, he came out and sat on the couch, something about his eyes looked different. I called my Mom and told her I was taking him back to the emergency room. I had a difficult time getting him dressed and knew at that time that I had to call 911 for help. While on the phone with 911 he had a seizure.
I was terrified, and in shock, as the paramedics came in, getting him checked out and then rushing us to the hospital. Upon getting examined at the hospital, they determined he needed to be airlifted to The University of Iowa Hospital, where he would be admitted in the Pediatric ICU. The doctors could not tell me if he was going to be ok.
When we could go into see him in ICU he was deeply sedated and on a ventilator. He had several IVs attached and monitors everywhere. At this point they were unsure what had made him so sick. The following day they concluded it was something called an Adenovirus. A common cold virus. The doctors saying they may see one or two kids a year that get it this badly. This virus had taken over his lungs, and ultimately began to spread to his kidneys. For a couple of days they thought he would need dialysis. His kidneys recovered miraculously without having to do that thankfully.
Max remained on the ventilator slowly making progress and 9 days later they removed the ventilator, the following day he was moved out of ICU to the regular pediatric unit. The day after that, I got to take him home.
For the last several days he has been slowly regaining his strength and appetite, slowly getting back to the vivacious kiddo that we all know and love. It is wonderful to see him dancing in the car again.
I will never get over seeing him go through that, my heart will never heal from the guilt, despite the doctors telling me that I couldn't have known that it would end up like it did.
My sweet Max, the boy that gets perfect attendance certificates every year at school, that never seems to get sick. Went from a picture of health, to fighting for his life.
I took him for a follow up check up at his regular doctor here in my town and everything looks great, his doctor thinks that he may have gotten two different cold viruses at the same time, basically overwhelming his body. Some strains of this adenovirus are very aggressive according to the doctor.
I know this, I thank God for saving my son, I thank the doctors and nurses who relentlessly cared for him and treated him. He was in the best of hands and I feel blessed that he is going to be ok.
I will write in a few days when things around here get back to normal.
Thanks to all of you who read the facebook updates and sent prayers all the days he was at the hospital, and to those of you who still ask for updates on how hes doing. I can say today that my sweet Max is on the road to recovery!!!
Until tomorrow....
Sunday, January 19, 2014
Wednesday, January 1, 2014
Day #57
I should have written this last night when the fear was fresh in my blood.....
Max has not felt well since Christmastime. Instead of getting better he appeared to me, to be getting worse. He hadn't eaten for 2 days, or did any of our normal routines, he just wanted to lay in his room, and sleep.
Last night, I think it must just be that "Mom feeling" we all get, that something is just not right. I couldn't look at his big blue eyes for another minute and see him suffering... literally suffering in silence, while panic was eating me alive. I took him to the emergency room, and although it is just a bug that will have to run its course, he has a fever. I was awake until 7am trying to squirt all these little containers of motrin in his mouth while he slept on and off. Each attempt woke him up and he'd spit it out, so most of what he needed to take.... has been scrubbed off of his bedroom carpet instead.
Despite the fever and retched cough that makes him vomit, he still was just as much a fighter in the hospital. I will be relentlessly trying to get more motrin and Tylenol in him throughout the day.
I'm so exhausted and I know he must be, he sleeps 10 minutes and wakes up. I wish he could just rest, I know it would help..
Happy New Year to all of you!
Until later....
Max has not felt well since Christmastime. Instead of getting better he appeared to me, to be getting worse. He hadn't eaten for 2 days, or did any of our normal routines, he just wanted to lay in his room, and sleep.
Last night, I think it must just be that "Mom feeling" we all get, that something is just not right. I couldn't look at his big blue eyes for another minute and see him suffering... literally suffering in silence, while panic was eating me alive. I took him to the emergency room, and although it is just a bug that will have to run its course, he has a fever. I was awake until 7am trying to squirt all these little containers of motrin in his mouth while he slept on and off. Each attempt woke him up and he'd spit it out, so most of what he needed to take.... has been scrubbed off of his bedroom carpet instead.
Despite the fever and retched cough that makes him vomit, he still was just as much a fighter in the hospital. I will be relentlessly trying to get more motrin and Tylenol in him throughout the day.
I'm so exhausted and I know he must be, he sleeps 10 minutes and wakes up. I wish he could just rest, I know it would help..
Happy New Year to all of you!
Until later....
Monday, December 30, 2013
Day #56
Another snow storm today in this, freezing cold, winter wonderland called Iowa. As Max and I were taking a ride this evening, and the snow was coming down... it looked like glitter falling out of the sky. It sparkled as it flitted across the passing headlights and landed on the road. Ahead of me it looked like glitter and diamonds everywhere.. beautiful. BUT... I am missing the warm air and sunny skies.
Despite Max not feeling well, he wanted to drive around town, not going anywhere, just driving, like every other night, tonight however, he didn't want to go to WalMart. I feel so bad for him, he hasn't felt good since Christmas. Thankfully he rarely gets sick, but times like this are particularly hard on him... he refuses to take cold medicine or anything else. The most I can do is rub Vic's on his chest and let him sit in the steamy bathroom to calm his coughing.
I wanted to talk about trust tonight. About a month ago, I was informed by the school district of a heartbreaking breach of trust. Someone that worked with Max had noticed when he was sitting down that his behind was showing because his pants had sagged. She thought it would be funny to take a picture of that, and send it via snap chat to other employees of the school. The recipients of that picture went and told the appropriate people. So I then receive a phone call from the director of special education, telling me what had happened. Needless to say, the person who took the photo is no longer working in the schools.
I was devastated. Max loved her, and I thought she was wonderful, and loved knowing that he was happy going to school, and loved working with her. The most tragic thing to me is that we, as parents of kids with disabilities, always have to worry about bullying from other students.... never did I imagine it would be from an adult employee who is supposed to care about my child. I think that is the most tormenting thing to me. My sweet son, and others like him, who trust people, who are innocent of malice and cruelty..... who have to rely on adults to keep them safe.... are often times even disregarded by those who we trust the most.
Max just had to go back to school one day and see that one of the people he loved the most, was gone... and I have to wonder how many days he looked for her to come back to class.... if he wondered where she was, or why she was gone. He was an unknowing victim, and so far as we can tell, knew nothing of that picture. For someone to knowingly disrespect my son like that, just sickens me. The worst kind of bully, is a bully that chooses someone who can't defend themselves, and an adult no less in charge of his well being, AND on the same week as the anti-bullying campaign at my school district.
I struggle with trusting people when it comes to my sweet Max anyway, and when I look into those big blue eyes of his, I can't fathom why anyone would think it was acceptable to make a joke of him. Its very sad, when those you trust the most are those that end up betraying you and your child.
Until tomorrow...........
Despite Max not feeling well, he wanted to drive around town, not going anywhere, just driving, like every other night, tonight however, he didn't want to go to WalMart. I feel so bad for him, he hasn't felt good since Christmas. Thankfully he rarely gets sick, but times like this are particularly hard on him... he refuses to take cold medicine or anything else. The most I can do is rub Vic's on his chest and let him sit in the steamy bathroom to calm his coughing.
I wanted to talk about trust tonight. About a month ago, I was informed by the school district of a heartbreaking breach of trust. Someone that worked with Max had noticed when he was sitting down that his behind was showing because his pants had sagged. She thought it would be funny to take a picture of that, and send it via snap chat to other employees of the school. The recipients of that picture went and told the appropriate people. So I then receive a phone call from the director of special education, telling me what had happened. Needless to say, the person who took the photo is no longer working in the schools.
I was devastated. Max loved her, and I thought she was wonderful, and loved knowing that he was happy going to school, and loved working with her. The most tragic thing to me is that we, as parents of kids with disabilities, always have to worry about bullying from other students.... never did I imagine it would be from an adult employee who is supposed to care about my child. I think that is the most tormenting thing to me. My sweet son, and others like him, who trust people, who are innocent of malice and cruelty..... who have to rely on adults to keep them safe.... are often times even disregarded by those who we trust the most.
Max just had to go back to school one day and see that one of the people he loved the most, was gone... and I have to wonder how many days he looked for her to come back to class.... if he wondered where she was, or why she was gone. He was an unknowing victim, and so far as we can tell, knew nothing of that picture. For someone to knowingly disrespect my son like that, just sickens me. The worst kind of bully, is a bully that chooses someone who can't defend themselves, and an adult no less in charge of his well being, AND on the same week as the anti-bullying campaign at my school district.
I struggle with trusting people when it comes to my sweet Max anyway, and when I look into those big blue eyes of his, I can't fathom why anyone would think it was acceptable to make a joke of him. Its very sad, when those you trust the most are those that end up betraying you and your child.
Until tomorrow...........
Sunday, December 29, 2013
The Other side of Day #55
So this is definitely the mad house tonight.... My cat, Bob, 17, toothless and kind of cross eyed has been staring at me for some time now....just staring, with her tongue sticking out, meowing that silent meow I have no idea why, she has food and water. Rufus our dog is whining because Bella, our other dog took the last rawhide away from him, I can't take it away from her... because he stole it from her to begin with, she just took it back.
Max is obsessed with watching How the Grinch Stole Christmas, and despite having hundreds of vhs tapes he could be watching..... he wants to watch The Grinch.. The Grinch, however is the only tape that refuses to play, so he is relentlessly pushing play, taking the tape out, putting it back in, rewinding it, forwarding it and crying. I have tried 25 other tapes hoping to appease him, and miserably failing. It is 9:35 pm and we have been doing this since 5:00, over 4 and a half hours. This is one of those segments of time that I throw my hands up in the air yelling, "GOD? Are you kidding me? I hear you can make miracles...... make the Grinch tape play!!" At this very moment he is almost asleep listening to the audio, despite the picture not working.... it hasn't worked in any of the other 8 vcrs I hooked up. Yep, 8 vcrs....
Katie and I have this ongoing joke between us, we laugh about it at work quite a bit. We believe that we are Gods reality show. We think if they are watching anything up there, they are watching us try and fail. Its probably a huge hit. If it were true, we should win some kind of award for being such a great variety show all these years.
I wonder tonight if I may be a little to stressed out. This is the 9th day of Christmas vacation. Not a lot of opportunities for work with all the holidays.... so on the days when we need more income for all of the hours and days of entertaining our boys.... we literally have nothing. But.... we are working on something, and with any luck it will be a huge success and finally we will be able to climb out of the ravages of "abject poverty" as our fellow Autism sister Michelle so eloquently puts it.
A person can buy just about anything online, or at Walmart.... where is that money tree we need so badly? I'm guessing its growing beside the fountain of youth.
Until tomorrow..........
Max is obsessed with watching How the Grinch Stole Christmas, and despite having hundreds of vhs tapes he could be watching..... he wants to watch The Grinch.. The Grinch, however is the only tape that refuses to play, so he is relentlessly pushing play, taking the tape out, putting it back in, rewinding it, forwarding it and crying. I have tried 25 other tapes hoping to appease him, and miserably failing. It is 9:35 pm and we have been doing this since 5:00, over 4 and a half hours. This is one of those segments of time that I throw my hands up in the air yelling, "GOD? Are you kidding me? I hear you can make miracles...... make the Grinch tape play!!" At this very moment he is almost asleep listening to the audio, despite the picture not working.... it hasn't worked in any of the other 8 vcrs I hooked up. Yep, 8 vcrs....
Katie and I have this ongoing joke between us, we laugh about it at work quite a bit. We believe that we are Gods reality show. We think if they are watching anything up there, they are watching us try and fail. Its probably a huge hit. If it were true, we should win some kind of award for being such a great variety show all these years.
I wonder tonight if I may be a little to stressed out. This is the 9th day of Christmas vacation. Not a lot of opportunities for work with all the holidays.... so on the days when we need more income for all of the hours and days of entertaining our boys.... we literally have nothing. But.... we are working on something, and with any luck it will be a huge success and finally we will be able to climb out of the ravages of "abject poverty" as our fellow Autism sister Michelle so eloquently puts it.
A person can buy just about anything online, or at Walmart.... where is that money tree we need so badly? I'm guessing its growing beside the fountain of youth.
Until tomorrow..........
Saturday, December 28, 2013
Day #55
I want to Thank you all for reading my blog, it means a lot to me that you do!! People in 10 countries are reading, and I am so thrilled! Do all of you share autism with me? I'd love to know your stories.
Since it is after 1am "technically" it is Day #55 even though I haven't gone to bed yet. I'm sitting up tonight thinking about what life will be like for Max when he's an adult. Katie and I want our boys to live together when they grow up. It is a really touchy subject for a lot of us, but for me.... I know it is a subject that can't be avoided.
I used to shutter at the thought of Max not living with me when he's an adult, but there are so many reasons why keeping him home would be unfair to him. I will grow old... we all will, and being able to give him what he needs when I am elderly will not be possible. What happens when I can no longer drive him around? If I use a walker or develop Alzheimer's? What if I am in poor health and need caregivers myself? I often feel guilty for thinking about it, but one thing that always crosses my mind is my death. If I keep him with me until I die.... what would happen if I died in my sleep? He wouldn't understand why I wasn't waking up. He would possibly not know how to call for help... How much time would pass before someone came to see if everything was ok? Would he be alone for hours, days? That makes my heart ache...
Suddenly his life would be turned inside out, and new and strange people would be putting him somewhere new, somewhere he would not know anyone. He wouldn't have a choice, and that would be my fault, because I didn't consider his life without me in it... ya know?
I want to be able to decide with him what his home will look like and who will be living with him, as well as who is caring for him when I can no longer do it. I know a lot of people who won't even entertain the thought of their child not being with them always, but avoiding reality isn't going to change what it is.
I think the biggest issue is, when we think of the future for our children, we look at our sweet sons and daughters faces at this moment in time, through our eyes... at this moment in time... not what it will be like in a decade or two. We all struggle with our children growing up... we all struggle with growing old, but its going to happen. I will somehow come to terms with it... over time, but several years from now when I do have to make those hard decisions for him, I at least will have the peace of mind that I made sure he would be ok... when I am gone.
Until tomorrow..........
Since it is after 1am "technically" it is Day #55 even though I haven't gone to bed yet. I'm sitting up tonight thinking about what life will be like for Max when he's an adult. Katie and I want our boys to live together when they grow up. It is a really touchy subject for a lot of us, but for me.... I know it is a subject that can't be avoided.
I used to shutter at the thought of Max not living with me when he's an adult, but there are so many reasons why keeping him home would be unfair to him. I will grow old... we all will, and being able to give him what he needs when I am elderly will not be possible. What happens when I can no longer drive him around? If I use a walker or develop Alzheimer's? What if I am in poor health and need caregivers myself? I often feel guilty for thinking about it, but one thing that always crosses my mind is my death. If I keep him with me until I die.... what would happen if I died in my sleep? He wouldn't understand why I wasn't waking up. He would possibly not know how to call for help... How much time would pass before someone came to see if everything was ok? Would he be alone for hours, days? That makes my heart ache...
Suddenly his life would be turned inside out, and new and strange people would be putting him somewhere new, somewhere he would not know anyone. He wouldn't have a choice, and that would be my fault, because I didn't consider his life without me in it... ya know?
I want to be able to decide with him what his home will look like and who will be living with him, as well as who is caring for him when I can no longer do it. I know a lot of people who won't even entertain the thought of their child not being with them always, but avoiding reality isn't going to change what it is.
I think the biggest issue is, when we think of the future for our children, we look at our sweet sons and daughters faces at this moment in time, through our eyes... at this moment in time... not what it will be like in a decade or two. We all struggle with our children growing up... we all struggle with growing old, but its going to happen. I will somehow come to terms with it... over time, but several years from now when I do have to make those hard decisions for him, I at least will have the peace of mind that I made sure he would be ok... when I am gone.
Until tomorrow..........
Day #54
I wonder if I am the only one who spends a lot of time bored out of my mind????!!! Max is watching movies, he hasn't felt good for a few days, finally tonight he is seeming more like himself. He has a lot of verbal stims. He yells, "Ahhhhhhh yaaaaaaa!" a lot when he is happy, and a lot of "OOOOOO's" Jay is addicted to a game on the internet called "Forsaken World" He plays it a lot, he is an assassin that kills dragons and monsters. Fun fun fun...
I have to talk about the insane dreams I have... I always try to rationalize them, but most of the time they make no sense. Last night... in my dream, I drove 6 hours from Iowa and miraculously made it to North Carolina, driving a 1980 red LTD car. 6 hours? So I pulled into a McDonald's.. of course there has to be a McDonald's right? An old friend of mine from decades ago named Jack, was ending his shift... that makes no sense because he's a musician. He came over to my car, my boys in the back seat and asked us to come over to his place and have pizza. We followed him to the end of the parking lot where he lived in a broken down trailer. We sat in his living room, and within minutes he was a haggard skinny old man. He ordered pizza and told me we could eat it on our way home, and shortly thereafter we left.
It always cracks me up how dreams can make no sense. I have always had strange dreams... when I was little I had a recurring dream where Uncle Sam would chase me through the jagged rocks along the Mississippi river.... I was so scared of him.
Hmmmm, so even in my dreams, things are strange... I guess its not always boring though. I wonder where my mind will take me tonight? I hope if it takes me back to Jacks house, he's playing bass, and not living in the McDonald's parking lot, and if he orders pizza again?.... I hope we get to sit at his kitchen table and catch up!
I have to talk about the insane dreams I have... I always try to rationalize them, but most of the time they make no sense. Last night... in my dream, I drove 6 hours from Iowa and miraculously made it to North Carolina, driving a 1980 red LTD car. 6 hours? So I pulled into a McDonald's.. of course there has to be a McDonald's right? An old friend of mine from decades ago named Jack, was ending his shift... that makes no sense because he's a musician. He came over to my car, my boys in the back seat and asked us to come over to his place and have pizza. We followed him to the end of the parking lot where he lived in a broken down trailer. We sat in his living room, and within minutes he was a haggard skinny old man. He ordered pizza and told me we could eat it on our way home, and shortly thereafter we left.
It always cracks me up how dreams can make no sense. I have always had strange dreams... when I was little I had a recurring dream where Uncle Sam would chase me through the jagged rocks along the Mississippi river.... I was so scared of him.
Hmmmm, so even in my dreams, things are strange... I guess its not always boring though. I wonder where my mind will take me tonight? I hope if it takes me back to Jacks house, he's playing bass, and not living in the McDonald's parking lot, and if he orders pizza again?.... I hope we get to sit at his kitchen table and catch up!
Friday, December 27, 2013
Day #53
I'm not sure how many of you know how much I LOVE Phantom of the Opera..... I love it, and the movie starring Gerard Butler and Emmy Rossum is my favorite version of it. I have watched it so many times.... I have it memorized. Most of us have a song we could listen to over and over, but me.... I have movies I watch over and over, several actually, all love stories, but Phantom is by far, one I have my own love affair with.
I sometimes play the soundtrack in my truck as I'm going nowhere and anywhere .That music just soaks into my soul, I wish everyone could see what I see in that production and feel what I feel when I hear it, I think it is just beautiful. If you haven't seen it.... you should make it a point to watch it, or listen to it.
I have said many times what a hopeless romantic I am, and something about the Phantom and Christine and their love for each other is so breathtaking. Maybe because it wasn't ultimately about what they looked like to each other, it was about how their music spoke to each others hearts.
Phantom sang toward the end "Masquerade, paper faces on parade, masquerade, hide your face so the world will never find you" That short sweet part of that production always makes me cry, no matter how many times I hear it or see it, because all he really wants is people to accept him. He makes beautiful music, but everyone still thinks he's a monster, because of his face. Oh anyway...
Maybe somehow that applies to life in general... we all want people to see the beauty within and most of the time they don't.
Until tomorrow..........
I sometimes play the soundtrack in my truck as I'm going nowhere and anywhere .That music just soaks into my soul, I wish everyone could see what I see in that production and feel what I feel when I hear it, I think it is just beautiful. If you haven't seen it.... you should make it a point to watch it, or listen to it.
I have said many times what a hopeless romantic I am, and something about the Phantom and Christine and their love for each other is so breathtaking. Maybe because it wasn't ultimately about what they looked like to each other, it was about how their music spoke to each others hearts.
Phantom sang toward the end "Masquerade, paper faces on parade, masquerade, hide your face so the world will never find you" That short sweet part of that production always makes me cry, no matter how many times I hear it or see it, because all he really wants is people to accept him. He makes beautiful music, but everyone still thinks he's a monster, because of his face. Oh anyway...
Maybe somehow that applies to life in general... we all want people to see the beauty within and most of the time they don't.
Until tomorrow..........
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