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!