Sunday, December 30, 2012

All about Jax

I climbed into bed around 10:30. Not too shabby! I was able to get through Jax night routine pretty quickly! Meds, treatments,  feeds, respiratory junk. Jax was quickly asleep a little after 10, his normal time. Arina had long been asleep, her bedtime being 8 o'clock.
As I'm laying in bed, listening to the hum of the concentrator, and the steady swoosh of breaths the ventilator pushes into his lungs, I hear another sound. This sound is like a burping. I fly out of my bed and into Jax room, because I know what that sound is. The sound of retching and vomiting. When Jax vomits on his ventilator, he has a much higher risk of aspirating, as the ventilator pushes it right down into his lungs. I suction his trach and his mouth, trying to get all the bile out so he doesn't aspirate. He falls right back to sleep, his heartrate much higher, his face more pale, he is exhausted from that episode. As I climb back into bed, my radar still out for the sounds of more vomiting, I start thinking of all the little things Jax goes through on a daily basis, that we don't even think about anymore.
When Jax vomits, he can't take a drink of water and rinse his mouth out. Sometimes I will squirt a little water from a syringe in there. But he has such a high aspiration risk, that I need to be super careful about that. I try the sponges, and I brush his teeth. But both of those are hard as well because he HATES having anything in his mouth, and he fights it like crazy! Can you imagine vomiting, or refluxing up and not being able to rinse your mouth out? Yuck!
Jax doesn't get feeds into his stomach, because of his reflux. His feeds go straight into his bowel. That means that Jax stomach is never full, he is always feeling hunger. He has never been one that fusses when hungry. But I can't imagine always having an empty stomach. Always feeling like you need to eat something.
Such small, seemingly stupid things. But things he goes through on daily basis besides the normal, big stuff.
He is such an amazing little person! How was I so lucky to be chosen to take care of this warrior boy?

I am starting a Facebook page for Jax. I was reminded by a friend that its about time, especially with a little sister who is feisty, and can take the spotlight from her big brother. This all started with Jax, and the Facebook page will be all Jax, all the time. Pictures, medical updates, you name it. It will be much easier to update there quickly if we need to. The blog will stay of course, the page will just be a faster way to get a Jax fix! Here is the link to his new page. Go "like" it so you can get on the go Jax!

We will probably be making a trip up to Utah either tomorrow or Tuesday. Its been a rough weekend, and I'm ready to let 2012 bite the dust! My mom is currently in shock trauma, and they have no idea whats wrong. She is unresponsive besides opening her eyes, but her head CT was normal. Its making me crazy that I can't talk to the doctor myself and get the medical info that my dad can't understand! Please pray that she is ok, and its nothing life threatening, I'm so worried! Also Ray's best friend and the best man at my wedding took his own life last Sunday. Ray will probably be flying up to Washington Friday for his funeral, and I will be traveling alone with the kids to Utah. Prayers are definitely appreciated this week!! Thank you friends for everything you do for us!!


Lindsey said...

I'm a first year pediatric resident and I have been reading your blog for over a year.. I love hearing updates on your warrior boy! You guys are an awesome family and you are such a great mom! I had a patient the other day who reminded me so so much of Jax- and from reading your blog I took extra time- not focusing only on the medical stuff, but also on his sweet freckles and his love of (no other than...) Mickey Mouse! Thank you for sharing your story!

The VW's said...

Love the idea of Jax's own FB page! I may have to do that for Gavin some day. Jax sure is an inspirational little man! Love him!

Sorry your week is going so badly! Praying for your mom, and all of you! Hugs!

Becca said...

Lacey, a poignant reminder of the things we take for granted, of the things we just don't realize about Max, and about the things you deal with on a daily basis. He's an amazing and resilient little boy, but you are seriously SUPER-MOM!!! I'm so, so sorry about Ray's friend, and about your mother -and I hope you get answers soon, and hope she recovers quickly!!!

Runningmama said...

Thinking of you and praying for you!

Anonymous said...

i love the jaxon updates!!! he's an amazing littl guy! i can't wait to LIKE him on facebook :)

and i never thought about the empty-tummy with the j-tube feeds...that's something i'll be thinking of frequently now with some of my students!

Alison said...

What an awful way to end the year - praying for you all xx

Colleen said...

Wow, first of all I'm sorry about both tragedies going on in your family. I can't imagine with everything you already have going on. Jax has an adorable face in the photo. He is a tough little man and fighter.

Anonymous said...

Sorry to hear about your mom. I'll add her to my prayer list, right next to Jax. :) What's her name? God will know who I mean if I say Jax's grandmother but it might be nice to have a name. :)

Lacey said...

Anonymous, I hope you see this, my moms name is Pam. Thank you for your prayers!

Anonymous said...


Thanks for your mom's name. I'll add Pam right next to Jax. :)