Wednesday, December 25, 2013

Merry Christmas!

Merry Christmas to all of our friends and followers! 

We are just thankful our munchkin is home and doing good. That's all we ever want! 
We love you all!

Sunday, December 8, 2013

Jaxsons bucket list!

Jax is keeping us on our toes, which is why I haven't posted in so long. We went to Utah for thanksgiving. A quick trip because daddy has no time off so we couldn't come down for Christmas. I got horribly sick with the flu. Jax wasn't really sick, but he kept having these weird airway episodes. It sounded like stridor. I changed his trach multiple times, and it wasn't that. It was like his airway was collapsing. We decided to just hurry home so we could get Jax to his doctors. 

In cedar city we stopped to pick something up from Rays aunt. While we were stopped Jax turned blue and dropped his sats into the 50's! I popped him on his vent and he did better. But I didn't have the battery power to get all the way home. We stopped in St. George to eat. I told Ray that I wasn't comfortable driving the rest of the way home with him. We had decided to stop at their hospital and see how they could help us. On our way to the car he did it again! This time he was on the vent already! I told Ray just to call 911!
They took us to Dixie where he continued to have desats and they had to bag him. They called life flight and he was flown back to salt lake to PCMC. 
We figured jax just wanted to cross off flying in a Life Flight airplane off his bucket list! We had to turn around and drive back up to salt lake. And this is where we've been since! Jax did test positive for the flu, and he also has the same blood infection he did last month. All of his lines had to come out, including the beloved port. Since then we've been waiting for negative cultures so we could put a new line in and go home. They won't transfer him because there is nothing CHOC has that PCMC doesn't, so they won't approve it! We were hoping today would be the day. But his cultures once again flipped positive! He also has a fever this morning. ID is worried the bug is colonized somewhere in his body, like his heart. Ray and the boys headed home today. They need to get back to school and work. Ray already won't get paid for last week, which is really stinky right before Christmas! Honestly I'm not even sure if our Christmas tree will get up! Me and Arina are still in Utah with Jax. They will drive up next weekend to pick us up. We are staying at my moms house, which is nice. But it still sucks! We just need to think negative so we can get out of the hospital and hopefully be together as a family for more than a week at a time!!