April 27th and 28th, 2012

OK. We got him extubated successfully. Now we just have to make it through the evening. We are hoping he continues to breathe strongly. If so, we should transfer back to Sloan Kettering across the way soon.

**Sorry, that was meant to post yesterday, sometimes it doesn't go through**

On to today, Saturday...
We successfully got him extubated and he was put on by-pap (?spelling) overnight. It looks like a fighter pilot mask that gives him O2 and some pressure while his lungs adjust to being without the breathing tube. He has done so well that we can switch him to a high flow canula anytime. All of his blood gases and his stats have been perfect. However, he has been sleeping so peacefully ever since the extubation that we are waiting until he stirs before switching to the canula. I know you would think he wouldn't want to sleep since he has been sedated for a week, but most of that was not good sleep. It was a doped up haze and so his mind and body need this good, REAL sleep. He is now off all his meds except for two; a very low dose of an anxiety med and a very low dose of morphine to help his body handle coming off of all the heavier sedation.
Yesterday was a HUGE hurdle! Thank everyone so much for all their prayers. We needed them! I think Zoe will be extubated today, so please pray for her too!
To review, we lost the chest/drainage tube on Wednesday, we lost the breathing tube Friday, we should be losing at least one of the nasal tubes in the next few hours (remember he has two different types of feeding tubes- one per nostril- only one was suppose to be used for feeding the other is meant to get extra air off his belly put there by the ventilator), the other nasal tube he might lose within 24 hours, we are doing a 24 hour urine collection on him and so we can lose the catheter tomorrow morning, we should be able to lose one if not both of his extra IVs soon as well (the ones he has in addition to his Hickman- one of the IVs went bad yesterday so they removed it and replaced it with another one, so still two extra)...I think that is most of it...
There are typically a lot of little things going on, but it can get hard to update everyone on all of those so I try to cover the bigger things (plenty of those lately).
With the weekend and all, we will stay in the PICU and go back to Sloan Kettering Monday. We shouldn't have to stay there for anything though. It should be a matter of getting our "plans" from them and then getting ready to head home until we start the next phase of treatment. More on that soon...

Don't let the fighter-pilot mask scare you. Much better than the breathing tube and he has been asleep almost the whole time he's been wearing it so it hasn't bothered him too bad.