Sunday, June 12, 2011

Thing One and Thing Two

Can I just say how much I hate trachs! They completely take over your life. It's much harder to take Jax anywhere (although we don't let that stop us!) And I swear I've gotten less sleep in the last year and a half, than in my whole life!
Jax was back to his incessant coughing last night. He coughed even in sleep, which meant I was sleeping on his floor because I had to suction him constantly. We never did get our lidocaine neb, ENT wouldn't write the prescription, because he couldn't remember the dose. Our trach vent coordinator was out of town for the week. Luckily it had started to get better, but now its back again!
I took him to the dentist the other day. He is trying to get Jax back molars to come in farther so he can put a cover on them. The hope is when Jax grinds his teeth, he is not grinding the front teeth down, he is grinding on this cover. His front teeth are about halfway gone, and if they get much lower, he is going to hit a nerve! But his teeth take forever to come all the way in because Jax has never eaten by mouth. His plan was to watch the front teeth closely, to make sure he doesn't get down to the nerve, and still try to get those back molars to come in. He said there is a surgery that they can take some of the gum out, but that is really painful. When I told him he was having surgery on the 21st, he wanted to try and piggyback with neurosurgery and clean his teeth, and go ahead and try to put a cover on those molars. But when I talked to neurosurgery, they said no way, especially not dental work!
When you do dental work it introduces bacteria to the body, and with putting hardware in Jax chest, she said that was extremely dangerous. She also said with this big of a surgery, neuro would not allow it. I'm getting a little nervous about Jax surgery. It's turning out to be a bigger deal than I thought, and there is a lot of stuff neurosurgery is concerned about and will be watching with him. So on the 21st, please keep Jax in your thoughts while he has surgery!

Since the weather has been so nice, I took Jax and Arina out front to play on the grass. Jax LOVES to be outdoors when he can. It was hard to get good pictures, the sun was so bright, both kids kept closing their eyes!

But I think I have a great new nickname for them both, thanks to Universal Orlando!





14 comments:

Shari said...

That little girl loves her some big brother! So so cute! Both of them.

Junior said...

so sweet, will be praying for Jax.

Chromosomally Enhanced said...

wowsa! so much for you to think about..I am so sending good thoughts all your way...Thing 1 and Thing 2 just ROCK!! smiles

Not a Perfect Mom said...

I love seeing Arina all over Jax...
and yikes about the teeth...ugh, like you don't have enough on your plate...

Alison said...

I love those shirts on your cuties! Will be thinking of you all for the 21st.

The VW's said...

Love those shirts.....and LOVE those precious cuties wearing them! I'll be praying for no more coughing, more sleep for you, and a great outcome for Jax's surgery! Hang in there Momma! HUGS!!!

Colleen said...

I still can't believe Jax doesn't qualify for home nursing. You must be exausted. They look so cute in their shirts!

Sadie O. said...

Great shirts... They are both so precious!

Rochelle said...

Adorable, can't wait to see our princess. Just seeing Arina makes us want tomorrow to come faster!

Erin said...

Love the t-shirts, so cute! It sounds like you have a lot on your mind. I will definitely be thinking about Jax and his up coming surgery.

Michelle said...

The trach is definitely a love/hate relationship in my opinion. It gives life while taking complete control over it. Praying for you right now. They look so cute in their little shirts. I will be on my knees on the 21st, you can count on it.

Becca said...

Love the photos, and the t-shirts!! Too cute!

I can't imagine the anxiety you feel with Jax' upcoming surgery. Mama needs some sleep, too!! Hope all will go smoothly for him so you can have a little peace of mind.

Melissa said...

I love their shirts!!

MAx A said...

Thank you for sharing all your amazing stories.
Thry are beautiful children and it brings me tears of joy that Jax had a wonderful mommy and daddy.
Thank you.