What's Wrong With Him?
When Owen was around 2.5 years old, he was barely learning to walk, and he looked funny doing so. He was clumsy and leaned to one side. He barely spoke, wore brightly colored hearing aids and signed. He sported a large deep scar on his neck.
We'd given up on Physical Therapy and started taking him to Gymboree. We loved our first teacher, signed on for another session, and ended up with a supreme dipshit who had not a sweet clue as to how to engage a small child.
After a few weeks of curious stares aimed at Owen, she marched up to me and demanded to know;
"So. What's wrong with him anyway?"
I almost laughed in her face. I mean, I've had a lot people say a lot of dumb things to me about Owen but, What's wrong with him? Really?? I actually felt sorry for her that she thought this was an ok way to ask about a 'special' kid.
And now I wonder. Are any of the folks reading this thinking the same thing? I've never really fully explained the kid.
So here goes.
Owen was diagnosed at birth with a Right Sided Congenital Diaphragmatic Hernia (CDH). A hole in the right side of his diaphragm allowed his liver and intestines to travel up into his chest cavity.
When he was born, he never took a breath because his lungs were being squished by the intruding organs. They tried to intubate and bag him but this was very difficult because his lungs really didn't have room to expand.
He was flown from Burlington Vermont to Boston to be placed on ECMO. (For you nurses out there; his O2 sat when he got on the plane was 62%, during the flight it went down to 20%, while they were putting him on ECMO it went as low as 8%, scary eh??)
By the time he got to Boston his lungs were badly damaged due to being bashed against his liver and intestines for over 12 hours. His surgeon said they were a cross between tissue paper and swiss cheese. Not good.
ECMO is a heart lung bypass machine that circulates and oxygenates the blood to give the heart and lungs time to rest and heal. It comes with serious risks including brain bleeds and blood clots. Most hospitals will only put a child on ECMO once, some don't use ECMO on CDH babies at all, something ridiculous about the risks outweighing the benefits.
He was on ECMO for 5 days and he looked good enough to come off.
He got steadily worse for a week, and the radical decision to put him back on was made. We made the decision with the assumption that he would die, but his surgeon had convinced us that no matter what happened, he'd learn something that could possibly help another CDH baby.
Owen had surgery to repair a hole in his lung in the ICU before they put him back on ECMO. At first they just bypassed his lungs. Within two days he was in heart failure so they went back in and attached the ECMO cannulas very close to his heart, during this procedure they severred a nerve paralysing his vocal chords on the right side.
He spent two more weeks on ECMO. During this time he suffered two brain bleeds, and a blood clot destroyed his left kidney. He had many serious infections requiring massive doses of antibiotics. The antibiotic Gentamicin is responsible for Owen's hearing loss.
Owen left the ICU after 8 weeks and spent another 6 weeks getting bigger and stronger. Because his organs were stretched and his muscle tone so poor, he suffered severe reflux which he was aspirating into his lungs. Had no suck/swallow reflex, he couldn't even suck a pacifier. He aspirated thin and thick liquids when we tried to feed him.
At three months old he had a Nissen Fundoplication to stop the reflux, had his left kidney removed and had a g-tube placed.
He came home after 101 days, on meds for seizures (oh yeah, he had some seizure activity while suffering a brain bleed), reflux, and diuretics because he was on so much formula to fatten him up.
His muscle tone was and still is pretty low, hence all the physical therapy.
I started to try to feed him by mouth at around 6 months but it never went well. His oral aversion was so bad that he'd gag at anything that went near his mouth. He's been in feeding therapy since he was around 10 months old. He only started eating last fall.
We learned about his hearing loss when he was around 15 months old. It started out mild but has progressed to profound.
So now you're all up to speed.
That's what's wrong with him.
Oh, and he still shits his pants. Now that's wrong.