Tuesday, July 19, 2011

Deep breaths!

Deep breaths! In and out!

I'm wondering if the drive home was enough time for me to cool down before writing this post. I'm not so sure it was, but here it goes!
You know Jax had dental work scheduled today under anesthesia. The hospital called yesterday, did his whole pre-op checklist. Got meds, and history, gave me times he had to stop eating and what time to be there.
We checked in at 8:30, went through the whole routine, changed into our medical garb, talked to the NP, and she walked us back to the waiting room where the docs come talk to us before taking him back. I began to wonder if something was wrong because we sat in that waiting room for a LONG time. She came back multiple times to ask me questions. Did they tell me not to give him his lovenox this morning?
Does he get labs to check his levels because he's on blood thinners? Platelets, PT-PTT?
He gets platelets in his CBC's, but they don't routinely do PT-PTT. Along with his monthly CBC, he also gets an anti 10a level, which makes sure that he's on the right dose of lovenox.
Off she goes again.
Soon the anesthesiologist and dentist come back. He tells me that he called hemoc and his cardio. Hemoc was adamant that he should have not been given his lovenox this morning before the procedure.
No one told me that yesterday. I wasn't concerned about it either because he's not being cut open, usually the lovenox is ok if there is no incision.
But anesthesia says we are going to have to reschedule! That Jax was far too complicated, and he wasn't going to take the risk! We sat in that hospital for 3 hours, going over history with 2 different people before we were told this wasn't going to happen!

Do you know your son is extremely complicated?

Uh, ya! We live it every day!
Are his toes normally blue? And his legs this mottled?
Yes, he has horrible circulation.
Your saying his airway collapses even with the trach?!
Yes, yes, and yes again!!

Come on people! You've seen this child for 5 1/2 years now. You should be able to look up every snippet of information ever taken on him on your trusty computer.
Once again you have wasted my time, and made me feel your incompetent!
I'm not just saying this because I'm the mother of a medically complicated child, but I do indeed have a degree to work in this hospital, and actually did work there for four years! So I can safely say that its not rocket science!

I do like all these signs now telling me that moving is the right thing to do! That its no longer about wanting to be close to the beach, and that daddy wants to move back where he grew up. Its not even about moving so we don't have to deal with having a wheelchair bound child in the snow. My son needs better care.
And although we are still worried about where we'll live for the first little bit, I'm positive it will all work out. No one wants to rent month to month, and we want to buy as soon as possible, because rent will actually be a lot more for us than a house payment. We may end up in an extended stay for a bit, but it will all be worth it in the end.
My warrior has worked far too hard for us to continue giving him less than perfect care! Its not fair to him.


Becca said...

Jax (and you!) soooo deserve perfect care. What a waste of time for everyone today! I'm guessing they waited until the very last second to read his chart, which is a real shame. Unbelievable. This move will be a good one...

Kristin said...

So sorry :(

Colleen said...

Uggh, I can so relate to your frustration. We went through this when Isaac's potassium levels were too low to go under anesthesia. They had his port accessed and everything!

Meghann said...

Oh, I'm SO sorry! That's just terrible. No day soon I'll read your blog and you'll be in Cali and things will be going better. I just know it!

aweyers2 said...

I have never commented here before but have been following for some time! You are so right, your son deserves nothing but the best! I'm sorry you had to waste your time there today but maybe that was God's way of saying he should have it where the people are on top of things and it will be done even better the next time!! You are so blessed to have Jaxson!

Chromosomally Enhanced said...

not fun...and sooo frustrating...I know it must be hard to get Jax taken care of and someone to watch the other kiddos while this is all going on...and for 3 hours...not good..hope you can get to Cali soon! smiles

Anonymous said...

So very sorry! I have been following your blog for quite some time, but have never commented. You have two of the most adorable children who deserve nothing more than the best there is! Hang strong! I will continue to pour my heart out to God for you and your entire family! God is able! He is there! He is the Great Physician! He will see you through this!

Scrappy quilter said...

So sorry you have had to go through this. Hugs

Amy @ OurScoop said...

That sucks! Well said, he deserves the very best! And you are an awesome mommy who makes sure that he gets it! I hope you have the best medical experiences when you get to Cali.

Anonymous said...

That happened to us - we travled really early in the morning to a hospital about an hour from home - had to have my husband take off work to care for our other kids etc... and after lots of waiting we too were told our kiddo was too complicated and the anethesiologist was refusing to do his part! UGH!!! So a week later we took an even longer trip to a different hospital and got the dental work completed and all is well.

Mama Mason-Mann said...

How frustrating Lacey!!! I would have been furious too!!!! I know this move is really complicated for you, but I know once you're settled it will be worth it! Good luck!!!!

Mel said...

Awww Lacey... I'm so sorry!! I hope things smooth out quickly for you guys!! Praying for you all!!

The VW's said...

What a pain!!! I would be so frustruated! Especially after waiting there for 3 hours.....plus you guys don't exactly live next door to the hospital, right?! So, they totally wasted your whole day! So sorry about this! Big Hugs!!!

Melissa said...

What a waste of time! I would be mad too.

Evie's Story said...

Aww friend...IM so sorry and I hear your frustration. So hard as the parent feeling like you're the primary advocate and like you need to know the answers before you can even ask questions.
Jax is SO lucky to have such an amazing mommy!

Anonymous said...

definitely frustrating!!!