Just wanted to fill everybody in on what's going on with my oldest son, Big Kid---a little more than 6 months after he was admitted to the hospital with complications from H1N1. You've all been so kind in comments and emails, so I wanted to update.
He's still on oxygen almost 20+ hours a day. When he's down at Kitty's house (about 2000 less in elevation than our house), he can go off of it for about an hour and a half tops with a saturation level of about 88---which is in the normal range for most of us. Then inexplicably it suddenly drops to like 68 or 70, which is low enough to be hospitalized. It's not gradual, it's just happens immediately.
A couple of times they've been out (and not planning ahead with the tank on hand) and he's just fallen over, gasping.
We had him evaluated cognitively and neurologically recently. It was time----giving him time to recover and to see what the possible long-term damage from oxygen deprivation might be.
This morning we got the results.
His neurological diagnostician is one we've seen twice before. First when Big Kid was about 13, and had a psychotic episode on his stimulant meds that had treated his ADHD initially. It wasn't working anymore, and at puberty, he started compulsively washing his hands until they bled.
The next time was about 4 years ago when Big Kid had a breakdown away at college and was hallucinating. He was ultimately diagnosed with bi-polar disorder and a panic disorder.
So Big Kid went through an intensive neurological testing process again.
And I've been crying all afternoon.
He's got new pronounced attention and short-term memory deficits. His processing functions have significantly been impaired---meaning that whatever information he retains can be only be accessed with an extended amount of time to get to it.
His fine motor deficits are mostly caused by the loss of spatial recognition. He can't place 3 blocks on another without it all falling down.
Bless his heart.
While the doc was giving us his findings, my boy got really confused and scared. We were sitting next to each other on a loveseat in the doc's office and he grabbed me and said, "Mom, does this mean that I'm mentally retarded now?"
I'm sad. I'm so sad.
Big Kid remembers when his mental functions were better. He's frustrated by it all, and scared. Yes, scared.
The doc has made many recommendations as to testing (recommended a brain scan among other tests) and cognitive therapy.
So we're going to have to start a new phase now.
I'm sorry to be such a baby. I just need to get this despair out of my system. I can't cry in front of him, I have to be strong. But I can spill it all to you guys.
My boy. My precious boy.