Saturday, January 1, 2011

Starting out the New Year with a bang!

Jaxson likes to start the year off with a bang. January seems to be his favorite time to visit the hospital.
January 08', he went into status. Which is constant seizing of the brain. Its bad, very bad! The brain will quickly die if this is not under control. They started with the smaller sedation meds. Ativan did nothing, so we transferred to PICU and tried propafol, typically used for sedated procedures.
That didn't work either, so last option is pentabarb. Man did I not know how deadly that drug was. He quickly went from this...

to this. Pentabarb coma's are like actually killing a persons brain. It stops all of his brain activity, and hopefully stops the seizures as well. But in the process it stops all the body's other systems. So an already fragile body, was quickly at deaths door. We were told he likely would not survive this, and if he did, the seizures would probably still be there. It was a very dark time for our family. Instead of celebrating a new year, we were getting ready to plan a funeral.

Of course he pulled through, because he is my hero! This is when we started the dreaded ketogenic diet. Oh I'm so glad we are off that dang thing! For those that wondered what his diet was, it is an all fat diet. With Jax it is easy to do, because he doesn't eat by mouth. So its just a different formula. You put their body into ketosis, they get zero sugar. As a result, his blood sugar was typically at around 50, instead of 80 t0 100 like a normal person. But this meant all of his meds, IV fluid, and food, had to be sugar free. Now I can try the blenderized diet with him. Wahoo!


January '09 was our Walmart event. If you don't remember that, click here. That was when he aspirated, stopped breathing and turned blue at Walmart. He earned himself an ambulance ride, and another surgery, because we found out that his nissen was no longer intact!

This last January, '10, was metapnuemo virus and 12 days in the PICU with an extremely sick little boy. Another firetruck ride, lights and sirens blaring, from our house to the hospital. We want to rename the firetruck the Jaxson, since he's been in that same firetruck 3 times!

This year we are hoping for no funny stuff from the little man. A fractured femur on Christmas was enough for us! But just in case, (and because I need to do it anyway!) I'm going to update his binder with any new meds and new diet info. In case he thinks he's ready for another firetruck ride! After all, its been a year!


18 comments:

Shari said...

I look at that little boy and I see strength, hope, and peace! He is so sweet! I could just eat him up! Jaxson, be good little man! No more firetrucks! :)

Scrappy quilter said...

He is looking so good. Just the sweetest little man around. Hope there are no firetrucks this Jan. Hugs

Cathy said...

You be a good boy and stay out of that hospital, Jaxson!!

Kellan's momma said...

Hi Lacey, I just read through a few of your past updates, I missed some around CHristmas, to see what happened to Jax's leg. poor baby! What I cannot believe, is that you even have to worry about people leaving nasty comments! Maybe I am naive, but I can't fathom that there are that mean and hateful people out there! Your children are beautiful, and I would love to kiss on Jax's sweet cheeks!! Bless you all, and Happy New Year!!

The VW's said...

He looks so cute and healthy in those pics! Let's keep it that way Jax! Love and Hugs sweet boy! And, Happy New Year to all of your family!

To Love Endlessly said...

Wow, what a few years in review! I sure hope you all avoided the fire truck this new year's! yikes!

Rochelle said...

How about we skip January just for Jax.

Tina said...

Here's praying for a wonderful, happy and HEALTHY (!!!) New Year. I really hope this year will be different for Jax and that he is going to blossom more and more each day along with his little motivational toy his little sister! Here's wishing all of you a peace filled year. HUGS

Sweet Pea's Mommy said...

Here's hoping that he is starting a new trend of being at home with his sister all year long!!!!

Junior said...

Happy New Year. Prayers for healthy year with no rides in the fire truck.

Melissa M said...

I'm hoping that Jax behaves this year and you can avoid the firetruck rides this Jan. Happy New Year!!

Chromosomally Enhanced said...

Lets keep the fire trucks to the parades!! Have a Healthy Happy New Year...smiles

Shelly Turpin said...

Hang in there Jax - don't give in to the peer pressure!!!
:)
We love him so much!
Happy New Year!

Becca said...

Happy New Year!! No firetrucks or ambulances this year, Jax, okay??!??

Kelly said...

29 more days (before January is over)......c'mon Jax, you can do it.........how about you settle for a toy firetruck!! Stay well, sweet boy!!

BTW, I am cyber-signing your rockin' green cast........Get well soon........your buddy, Landon:)

Corinne Judy Smith said...

I had a lot of reading and catching up to do. I'm so glad you guys had a good Christmas (minus the ER with Jax). I'm sorry I missed you at lunch, I hope we can all meet up soon! Thinking of you guys!

LibsMommy said...

Praying for 2011 to be a good year to Jax. He is so Handsome and looks so well :)

Amy said...

Oh our boys!!!! Jax has Gabriel beat with the fire truck though. Boy he and Gabriel looked so much alike in their PICU pics and we too were looking a funeral right in the face. The pain is something I would love never to go through again. Gabriel turns 2 on the 9th and hes been terriable enough the last 2 years - so what the heck will the 2s bring us. We are also trying to get past January Curse also (for us Jan to May the last 2 years)- not good for Gabriel and the hospital hotel.
Hang in there and love those precious children like there is no tommorrows. An may Jax drive you crazy for many many more.