When I returned from sleeping and showering (amazing how much that helps), I hear this totally aggravated wail. I walk into the room and see.....AMELIE'S HAIR!
She lost her ICP valve this morning (they had clamped it last night), and then took off her gauze cap.
I'm not sure I can properly explain how filthy her head is.
- She has had her head wrapped in gauze for 4 straight days. She is a sweaty, sweaty child.
- She had her head washed in red anti-bacterial, anti-microbial, anti-fungal soap before the surgery, which has died most of her hair a strawberry blonde. It's like a bad dye job with Manic Panic
- She has dried blood in her hair.
- She has dried cranial-spinal fluid in her hair.
It has a level of funk that is quite potent.
My feet while hiking do not come anywhere near as bad as this.
We cannot get the sutures wet for a week.
I have lived with dead rotting things in my refrigerator for months on end when I lived with 12 other guys in a house, so this is no problem for me.
Shel, however, is a clean person. She likes things to be orderly and clean. It's kind of fun watching her wrinkle her nose at the stinky funk coming off Amie's head.
My feet while hiking do not come anywhere near as bad as this.
We cannot get the sutures wet for a week.
I have lived with dead rotting things in my refrigerator for months on end when I lived with 12 other guys in a house, so this is no problem for me.
Shel, however, is a clean person. She likes things to be orderly and clean. It's kind of fun watching her wrinkle her nose at the stinky funk coming off Amie's head.
Amelie enjoys eating. I would too if I'd been getting my food from a tube for days.
They've left the IV in her hand for the time being, but she doesn't have any fluids going in. I think we can all agree that she looks about as close to normal as possible.
The healing ability of the human body is amazing. 3 days ago she had brain surgery. 5 minutes ago she patted me on the back and said "Night Night", as she closed her eyes to sleep.
Scrunchy Face. 'Nuff Said.
Oh yeah, they moved us off the PICU floor, and we're now on a normal Children's floor. WAY lfewer status checks. She's sleeping without her Pulse Ox and blood pressure cuff. She still has her IV lead in, but no tubes connected to it. The only wires are the heart and respiratory leads that are still there.
They have mentioned that we might be going home tomorrow to heal up, because she apparently has some Wolverine blood in her. We might need to start calling her Logan. For those of you who don't get my geeky references, I apologize. I'm a geek. Proud. Forever.
The next post I'm going to put up (in a few hours) is going to have pictures of her sutures. I am fascinated by them, but they're going to be a bit much for some...so I'm warning you now. Heads up!
Would they let you use dry shampoo on her hair? It might help a little. Idk though...
ReplyDeleteI'd rather enjoy the stink. It endears me to her.
DeleteI am a stinky boy.
She is a stinky girl.
I enjoyed this video the most. So wonderful to hear that she's no longer ICU status! Might be true about the Wolverine blood theory, she looks terrific knowing everything she's endured over the past week! And I can't believe I forgot about this Victor story:http://www.med.umich.edu/michigandifference/victor-stories/max.html. I read through these over and over and over again when I first got my job, they're pretty spectacular!
ReplyDeleteJason(i think i can call you that now) I know my mom told you im overseas but i wanted to drop you some love. You and shelly are two of the strongest people i know. I just watched the videos you guys have been putting up and putting my son in context made me break down and cry. I know you HATE country music but i think you will like the song tough little boys by gary allen(youtube it). Im working on some majic from kuwait(its a secret) but i think your tough as nails little girl will like. Thats all i got for now *ps im 8 hrs ahead so if your up late feel free to call me anytime my number is 7327514726. Lots of love and support from kuwait.
ReplyDeleteSSgt Greca
Yay! Lots of smiles!
ReplyDeleteEvery kid that goes thru Mott gets some of that Wolverine Blood its their secret ingredient that helps make them so strong.FYI it stays with them forever Ty got his at 5 and he is now 17.
ReplyDeleteYour blogs are full of eloquence and grace. Your family's strength is a true inspiration. Thank you for including all of us on this journey. Prayers always
ReplyDeleteHello Jason, Amelie and family,
ReplyDeleteFirst off I want to tell you how beautiful and brave your little girl is! WOW...what a trooper. She is a "hero" in my eyes like a little princess warrior. Already up and trying to walk?! You go Amelie!
Secondly, I am in awe at the strength and contagious optimism that you (Jason) and your wife have. I cannot fathom the feelings and emotions that you all have had to encounter. It will most definitely give your little girl the strength and will to fight this.
I also thank you for allowing the world to take part in your private life through the heartfelt posts, pictures and videos. It makes me feel as though I know your sweet Amelie although I have never met her. Your words have brought me to both tears and laughter and back again. I had to smile while I read this post about her "stinky" head because I know that stench far too well. I wore a full leg cast for almost a year and YUCK is the best way to describe that smell. Please tell your wife that I promise that it will go away!
I will continue to follow Amelie's "adventures" as you have called it while sending my prayers and thoughts to all of you each time. I also read that Amelie likes cats/kittens, right?! Well, please expect a small package for her soon.
Best wishes and prayers,
Jennifer Johnson (your former BHS "F" hall colleague) :)