You probably know by now, my boy has been quote "crook" unquote. You can read about our baby's health and the boy's birth story if you want an update.
Lots of people have been asking how he is. When I say "He's great! Still on the oxygen at night though" they look at me in shock!
"But he looks great!"
"But he's always so happy!"
"I thought he was off it!?"
These are the common responses for the young chap.
First off, he always looks great. He's my boy, of course he looks adorable and fantastic all the time.
*insert Tork catalogue pose here*
And even with oxygen attached to his face 24 hours a day, he's always smiled. Always been the one to laugh.
But he has been off it, it just never has come off it at night.
It's such a chore now too. With his crawling all over the place, it's difficult to keep him still to attach it. He loves playing with it though. Loves it like crazy hehehehe.
But, it's such a terrible chore for us. Look at this..
See the white tape? That's what goes against his face every night to hold the oxygen tubing in place. They are the size of two thumbnails and are sticky as masking tape.
Every morning we heartbreakingly tear them off his face ready for the day.
He laughs at it..
Such a strong boy. He's so used to it though.
So I've been compiling over the last month this lot, stuck against his oxygen tank, just to show he's still on oxygen and what we hopefully will stop doing very soon.
See that sort of silver knob? It is turned to the lowest possible level of O2 release. A level many doctors have said is now useless, but our main doctor refuses to budge from removing all together.
I am going to take it off no matter that the docs say. Fighting tooth and nail (and cheek skin) for my boy to stop going through it every night/morning. He pulls it off his face during the night anyway!
Well, no more ranting. Wanted to update you all.
Not so much a sob story on our part. More of an understanding of what we do each night when a kid has Tracheomalacia. Also, an understanding of how lucky you can be to have a healthy kid, and how much unluckier we could have actually been with him.
- tork
