Still on life support

So Noah is still on life support...they were able to take him off the EEG this morning because his siezures have stopped and he is back to baseline siezure-wise.... They were going to try to remove the life support today but decided against it. They decided that they wanted to make sure his stomach surgery from 2008 was still intact before removing. They also wanted to give him a med that would help with swelling in his throat from removing the tube on Wednesday and having to replace the tube.....and they wanted to give him lasix to help with the water retention that he is having...the plan if all goes well is to try tomorrow morning if all goes well... They also want to try to lower the stats on the respirator and make Noah do more of the work today. They are being very careful so that the next time they remove the tube it doesnt have to go back in. They are unable to lower the stats yet because while in for his test he woke up and began to struggle a little bit with the tube being down his throat so they had to sedate him more than they usually have too... The test showed that his stomach surgery is still intact and doing well... So now it is just a waiting game.........crossing fingers for tomorrow!!!

On Life Support at MMC

So we tried to get Noah off Life Support today and he wasnt able to stay off they had to put him back on...he was breathing to fast and had to much salivia and wasnt protecting his airway....will try in another couple days but will be on life support a few more days.... DR thinks this isnt permanent but it could take anywhere from a couple of days to a couple weeks for his lungs to be strong enough :(

One Step Foward Two Steps back

Noah did so well last week. He was off 02 and almost siezure free.... smiling and babbling...Life was so great! I was so excited...I couldnt say it enough "Noah is off 02" and then Saturday the siezures began again....and then yesterday he started requiring 02 again and we are back to square one. It is so frustrating some days I just want to scream at the world....I know deep down that needing 02 isnt the end of the world for him but it just sucks... I thought we had proved the doctors wrong again. I thought we overcame it... His birthday is tomorrow..... 5 years old...I really cannot believe it....Its been such a journey of ups & downs and its been worth every minute... He is a fighter and Im so proud of everything he has accomplished in these 5 years. Im proud to be his mom. He is such a special little guy.... and he brings so much joy to my life.... Preschool graduation is coming....June 8th...wow....what a accomplishment for him!!!