Half a year

Six months ago today the doctor called me out of my son's PICU room to discuss his breathing. The x-ray of his chest was getting worse. It wasn't pneumonia...but they didn't know what it was.
I could either willingly have them sedate him into a medical coma and intubate him or wait and they may have to do it as an emergency procedure. Ever had to make a decision like that before??? Willingly, they could take their time, get things just right and keep him safe and comfortable. If I waited, he might crash and they would have to rush to keep him alive. Never again do I want to make a decision like that. Really there wasn't a decision, of course I wanted safe but no one wants their child (or anyone) in that state of there but not really there. No one wants to talk to someone who just can't talk back.

Last week we had a six month follow up to get the blood test results from last month. Everything is normal. Let me say that again. EVERYTHING. IS. NORMAL.
His angry liver has calmed down. His metabolism is good. His blood oxygen is steady between 98 to 99 percent. Six months ago he was under 50% oxygen, at that level, if held for too long, brain damage can occur. So the rush and the fuss we felt that first 24 hours at the hospital makes sense now.  Medical miracle that he is just keeps going. My boy makes me proud, not for his wit or his smarts, not for being so cute or talented. He makes me proud for breathing and not giving up. This summer the boy has lots of blood work and a biopsy to see how pretty his liver is. He and the liver dude agree that it will be perfect, like this never happened.

I am trying to let myself get back to normal. I try really hard not to smother the boy, he is 17 after all. And I know these months have been hard on him from that perspective too. I have been in a WAY too protective mode. But I have been scared to Hades and back! I have repeatedly told him, please give me grace in this, know that I am a wreck of worry for you. And he has been understanding to a point. When he coughs and I come out of my skin.... he gets a little peeved. When he coughs again and I'm yelling, "What's WRONG!?!?!?!?!" He answers with nothing. But Lord help me if there is a third cough. I'd be on my way to the hospital like Superman out to save the day.

So where are we now?   Exhausted from running around. I can barely keep up with his schedule. He is running from performance, to school, to rehearsal and back again. And he told me last week, that this might be exhausting and crazy but he wouldn't change it for the world.

Rare Disease Day - February 28

I had all intentions of posting a grand, deep post about rare diseases and the effect they have had on my family. And then I got taken out by a common cold and missed the day. Oops. 

A common cold that the boy gave me. The boy had it for a few days, sneezing, sniffling but he pushed forward. Weakened immune system and all. A common cold in me...I"m a mess! I must be getting old. 
I hope you will think of those around you that may be living with a rare disease. I'm sure they are there. They are used to hearing, but you don't look sick. 

Not too long ago I apologized to the boy. He was confused. I was honest. You see he is a teenager. And he is a boy. So for close to a year he has been driving me a little insane. He has been a “lazy teenager” which isn’t something I am used to at all. He has been depressive. Not just him normal introverted self, but extra MEH. In my learning I have found that everything he was, everything that I lectured him on, was all leading to this diagnosis.

And for that I was truly sorry. I lost a few Mom points when I figured that one out. I felt horrible. And so, I apologized. Just as he had said he was sorry while we were in the PICU. Just as he was worried about friends being scared to see him. I was sorry I didn’t maintain myself better. I was worried that maybe I could have kept him out of the hospital… if only. If only….

The liver dude said it best, what happened happened. No one did anything wrong. You just had NO IDEA what you were up against. No one would think a perfectly healthy teenager would have an underlying illness causes these “symptoms”. No one had a common thread to understand there was a dark sinister monster hiding under the bed. Because, he doesn't look sick.

But now we know. And knowing is half of the battle.