My son, Kameron got fit for a wheelchair last week. It's taken me almost seven years to allow it, but I finally gave in.
Kam's been through a lot in his little life. Born three months premature because his mom couldn't resist smoking a little crack to ring in the Millennium, he started life with a inter-cranial hemorrhage, optic nerve damage, retenopathy, virtually no lungs, and heart issues. Despite this horrific start, Kam refused to die. Thankfully, his biological parents were stripped of their rights to him, and he was placed under the care of the court. Eventually, Kam was trached and put on a ventilator at Children's hospital in Denver.
He spent his first year there, with tons of wonderful medical care and volunteers who tried to nurture him. When I met him in November of 2000, he didn't have a lot of charm or "cuteness". His head was huge because of the brain bleed, he was largely unresponsive, and had a two huge tubes tied onto the trach in his neck attaching him to a ventilator that made a lot of noise and occasionally started alarming.
But he captivated me.
I spent the next two months fighting to get him. I had to get his room set up, set up supply companies for oxygen and diapers and meds, find and hire 24 hour nurses, physical, speech, and occupational therapists. I had to drive the 120 mile round-trip to Denver countless times being trained to trouble-shoot the ventilator - his respiratory therapist trained my then fifteen-year-old son and me how to tear it down and rebuild it, and we had to learn how to change the trachs in his neck, how to suction out secretions...and on and on. January 8th, 2001 he came home.
In short, loving Kameron was an investment from the start. But so worth it.
Three years after he came to us, the feeding tube, trach, and ventilator were all gone. He was learning to talk, laughed his head off, loved everyone he met, and remembered us all.
He came to life.
His growth was phenomenal. Then, just over a year ago, he had what looked like a bad case of the flu. No biggie, everyone in our huge family was sick. But, Kam didn't get better, and that night he had a grand mal seizure. Surprisingly, with all his issues he'd never had seizures.
I called 911. Weeks and weeks went by. Kam was in and out of intensive care. The long and short of it is that he had multiple, huge, arterio venous malformations (the things that caused that Senator to almost die recently). They were actually cutting off the normal flow of blood to his brain. The blood was pumping into his head, but couldn't get out so the pressure was building up and causing stroke-like symptoms. Our local hospital didn't know what to do. They were going to attempt brain surgery, but didn't expect that Kam would survive. There were too many huge blood vessels clumped together in his head and he would most likely bleed to death trying to remove them.
Again, God had other plans for our little survivor. A doctor in Denver was "found" who specializes in treating these rare malformations using angiography (like for heart patients, but going up to the brain with the catheter) and embolization. Essentially, the doctor would insert a catheter in Kam's groin and go up into his brain, using dye and "materials" to try to shut off all the offending, unnecessary arteries and attempting to restore more normal blood flow.
Sixteen of these procedures later, Kam is finally doing better. He's been close to death many times, and I've tried to let him go, but for now, he's better.
Anyway, back to the chair. So, for more than a year he's hardly been able to hold his head up, let alone pull to stand and try to walk. He is gaining ground again - with assistance, we can get him to stand. He uses a walker-like device at school...but I'm finally realizing that maybe my stubborn refusal to get him a wheelchair is not helping him, but keeping him from a measure of control and freedom.
It feels like letting go of a dream. Maybe, in letting this go I'm being a good mother. Maybe, letting him run around in his yellow and black (to match the school bus) Quickie (what a name for a wheelchair) and letting go of my dream for him to be able to walk out back and climb up on the tramp by himself...maybe that's the best we can do now.
But it's hard.
Kam's been through a lot in his little life. Born three months premature because his mom couldn't resist smoking a little crack to ring in the Millennium, he started life with a inter-cranial hemorrhage, optic nerve damage, retenopathy, virtually no lungs, and heart issues. Despite this horrific start, Kam refused to die. Thankfully, his biological parents were stripped of their rights to him, and he was placed under the care of the court. Eventually, Kam was trached and put on a ventilator at Children's hospital in Denver.
He spent his first year there, with tons of wonderful medical care and volunteers who tried to nurture him. When I met him in November of 2000, he didn't have a lot of charm or "cuteness". His head was huge because of the brain bleed, he was largely unresponsive, and had a two huge tubes tied onto the trach in his neck attaching him to a ventilator that made a lot of noise and occasionally started alarming.
But he captivated me.
I spent the next two months fighting to get him. I had to get his room set up, set up supply companies for oxygen and diapers and meds, find and hire 24 hour nurses, physical, speech, and occupational therapists. I had to drive the 120 mile round-trip to Denver countless times being trained to trouble-shoot the ventilator - his respiratory therapist trained my then fifteen-year-old son and me how to tear it down and rebuild it, and we had to learn how to change the trachs in his neck, how to suction out secretions...and on and on. January 8th, 2001 he came home.
In short, loving Kameron was an investment from the start. But so worth it.
Three years after he came to us, the feeding tube, trach, and ventilator were all gone. He was learning to talk, laughed his head off, loved everyone he met, and remembered us all.
He came to life.
His growth was phenomenal. Then, just over a year ago, he had what looked like a bad case of the flu. No biggie, everyone in our huge family was sick. But, Kam didn't get better, and that night he had a grand mal seizure. Surprisingly, with all his issues he'd never had seizures.
I called 911. Weeks and weeks went by. Kam was in and out of intensive care. The long and short of it is that he had multiple, huge, arterio venous malformations (the things that caused that Senator to almost die recently). They were actually cutting off the normal flow of blood to his brain. The blood was pumping into his head, but couldn't get out so the pressure was building up and causing stroke-like symptoms. Our local hospital didn't know what to do. They were going to attempt brain surgery, but didn't expect that Kam would survive. There were too many huge blood vessels clumped together in his head and he would most likely bleed to death trying to remove them.
Again, God had other plans for our little survivor. A doctor in Denver was "found" who specializes in treating these rare malformations using angiography (like for heart patients, but going up to the brain with the catheter) and embolization. Essentially, the doctor would insert a catheter in Kam's groin and go up into his brain, using dye and "materials" to try to shut off all the offending, unnecessary arteries and attempting to restore more normal blood flow.
Sixteen of these procedures later, Kam is finally doing better. He's been close to death many times, and I've tried to let him go, but for now, he's better.
Anyway, back to the chair. So, for more than a year he's hardly been able to hold his head up, let alone pull to stand and try to walk. He is gaining ground again - with assistance, we can get him to stand. He uses a walker-like device at school...but I'm finally realizing that maybe my stubborn refusal to get him a wheelchair is not helping him, but keeping him from a measure of control and freedom.
It feels like letting go of a dream. Maybe, in letting this go I'm being a good mother. Maybe, letting him run around in his yellow and black (to match the school bus) Quickie (what a name for a wheelchair) and letting go of my dream for him to be able to walk out back and climb up on the tramp by himself...maybe that's the best we can do now.
But it's hard.
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