Saturday, October 20, 2007

Adriana and Kody Update

Thank you all soooo much for the prayers, the well wishes and for giving me the "oomph" I needed to keep going yesterday.

Here's what we know so far...

Yesterday the Doc's at Florida South Hospital in Orlando did and X-Ray series on the baby, while they were x-raying her they had her drink at the same time.
Within seconds of the test they could see that she has something called "reflux".
She drinks her bottle and it comes back up, except that it dosn't come "out" {sorry, I know it's early}.
So, basically she has been aspirating on her own food.
This is soooo scarey because she could have, at any time, died in her sleep.

This morning an "Apnea Monitor" is being delivered to the hospital and Kayara will take a two hour course to learn how to set it up and use it. Afterwards she'll take an hour long CPR course and pass it {which should be no problem, she used to be an ambulance volunteer way back when} with flying colors and then they will release Adriana.

She's also taking a medicine now and for the life of me right now, I can't remember what it''s called but Kayara says it seems to be working.

Soooo.....it seems to me that all those prayers are working bigtime, but please keep them up because I have a feeling this is going to be a long ride for a while.

Now on to the Kody update..

I talked to the Neurosurgical Dept. at Shands yesterday {Dr. Pincus' office} and they scheduled Kody for this coming Wednesday morning. His Cat-Scan is at 9:20, then we go and get him a "Shunt Series" done and the we go up to Neurosurgical Specialties and see Dr. Pincus.
It was late in the afternoon when I found this out so I won't be able to call Neurology until Monday morning to find out when they can get him in there...we were hoping all would be done on the same day.

I don't think I fully told you all what exactly was going on with Kody so let me tell you now...while Alona {she's here...yep, finally!} is giving me a 20 second break. :0)

For the past couple, maybe 2 1/2 months we've noticed that his voice is going. First we thought it was the puberty voice changing thing but intead of his voice going from deep to squeaky and back again..it's just been getting quieter, and slurrier. It is, at the point where it's even difficult for us to understand him.
In addition...slowly he's been developing other symtoms like, clumsiness, confusion, he can't follow directions {even simple ones like "get into line"}, can't retain information, his short term memory problems are back, he's been getting morning headaches again and he is in a contant state of being what we call "The Kody Zone"..he's in his world, totally oblivious to anything..like a constant stae of confusion.

It was best described to me as this..

You know when a drunk has had too much to drink and they overcompensate to try to act "normal" but it is obvious that they are not...that is how he is.

We know things are changing, others besides family have seen it too.

Sooo...we'll start off with the VP shunt that he has in his head which leads down to his belly.
All the signs, especially the morning hedaches,leads us in the direction that his shunt is malfunctioning.
If so, he'll need it taken out and another put in.
That's a good fix...but, it comes with it's own set of complications..a fourth brain surgery.
Any surgery is dangerous...another brain surgery could really set him back bigtime.

If we find out his ventricles are within a normal range, then it's up to Neurology to help us figure out what is going on, medicines, seizure episodes, we just don't know.

Please keep praying for him too.
He's knows something is wrong, he's feeling the sting if being teased, and he just wants so bad to be normal again.
This is the first time in a long while that it is clear he has brain damage.
But...he's still a happy, lovey kid..and nothing can take that away. :0)

OK, I better run...cinnamon rolls are ready {Pillsbury..not homemade!!} and Alona has got everyone going crazy with her energy...energy my kiddo's don't have much of in the AM. LOL!!

Have a beautiful day everyone!!

Love, Kim

14 comments:

christie said...

You and your family are in my thoughts and prayers...Please keep us updated as things progress. You are a very strong family.
((hugs))christie

Anonymous said...

You know, it wouldn't be a bad idea for all of you to take the CPR class. My hubby and I both have it, but I think when mine expires I will have my kids (14 & 8) also take it. You never know when something can happen.

Hopefully Kody can be "fixed" with some new medicine. I hope it isn't anything serious! What is up with kids and their teasing? Sorry, but those kids are brats. :0)

Cheri

Anonymous said...

Thanks for the update Kim, glad they got that baby figured out and in the right direction. She should be back in her own home before we know it.
Kody, hope they get you fixed and feeling better quickly. Sorry to hear about the kids at school. You guys have a great weekend, it's a beautiful one here in Missouri!!
Hugs,
Jill

acutescrubnurse said...

Kim,
You and your family are in my thoughts and prayers. Have you ever thought of having one of Kody's counselors at school or a school nurse, or someone who knows whats going on with him presnt Kody's situation to the kids in his class/school?? My son Alex has a speech impedement, his speech instructor at the college presented to his class about Alex's speech issues and how he has no control over it, and how teasing/bullying will not be tolerated, as it is harrassment, and she will see to it that whomever teases him will get the proper punishment. She seemed to get her point across very well!! Alex has not had many, if any issues this year, so life has been better this year!! I would definately think about it, if I were you.
Hope you all have a super weekend!! Take care of those kiddos.
Rita

Lisa said...

Hi Kim - Glad the little one is doing better and Kody - well, at least all his problems are being looked at. Brain surgery must be so frightening for you all, he's one of the toughest fighters I've heard of. I'm sure he'd be back on the skateboard in record time. Keeping you all in my prayers that you find out what is going on with him very soon.

CindyS said...

Kim, your family is in our prayers. I'm so sorry you are having to deal with this.
CindyS - gurlzrok

Bethany said...

Lord, can't a family just catch a BREAK?!?! Our prayers are with your family girl! Let me know if you need anything at all, and keep us posted. Lots of love for you all!

MarlaCharles said...

Kim,

I am glad tha baby is doing better and hope that everything with Kody gets checked out and nothing serious. As always ya'll (wow haven't said that in years, since I lived on the coast) are in my thoughts and prayers.

Marla Brader

Anonymous said...

Thank God the doctors have figured out what is going on with Adriana. I'm so thankful things are going to work out with her and that it was during the day and Mommy saw everything when this all happened.

As for Kody...I sure wish things weren't going on BUT.......we all know Kody and how much of a fighter he is and he WILL prevail. As my wristband says, "Life's Tough, [but Kody's] Tougher"!! Keep your chin up, Kody. I'm one of a gazillion people thinking about you.

Love always,
Shiela

AJ said...

You guys hang in there!
We'll keep praying,
with hugs...

Lauren said...

aww that sucks :(
i have reflux so i know how awful it can feel... there's actualy a really simple procedure called a nissan fundoplication that can fix it... i hope whatever they decide to do, she can get some relief!
it also helps to have her sleep on a wedge.

and i hope they can find out how to make kody better too!

Lauren said...

oops i meant laproscopic fundoplication.. a nissan is something different.

Anonymous said...

I'm so glad Adrianna is doing better. The funny thing is, in my mind I had already diagnosed her with reflux! My co-worker had the very same thing happen to her baby at 6 weeks old. She was eating and turned blue- gasped and cried a little and did it again. Proceeded to do it yet again for the paramedics. After shipping her an hour away to a children's hospital and doing 2 days worth of tests- including a spinal tap to rule out meningitis, it was discovered she had reflux. She was discharged within a couple days on Zantac and hasn't had any problems since. (that was about 6 weeks ago) I have a niece and nephew who both were on Zantac until 1 year old and it is believed that is what is responsible for damaging my older sister's lungs. Good Luck with Kody's appointment. Praying it's an easy fix! Beth L. Mansfield, OH

heirloompics said...

Hi Kim!
I am glad to see that cute baby home again. I am praying that all will be well for her. As far as Kody goes, I will ALWAYS pray for that cute boy of yours. WE LOVE YOU KODY! Bless you all! :)

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