PROGRESS!!! He's off the ventilator!

Andrew has officially been off the ventilator for over 24 hours! He's now on CPAP - continuous positive airway pressure. This machine has a mask that fits over his nose, which provides oxygen and pressure to him to help expand his lungs, but all breaths need to be initiated by him. This is different than the ventilator, which would breathe for him when he forgot or got too tired to breathe. This is a great step forward for Andrew - he's doing a great job but working hard, so he's getting a series of steroids to help with lung inflammation. This will hopefully help his oxygen and pressure requirements. If they drift up too much - or he is having problems getting rid of CO2 (evident in blood work done periodically) he will have to go back on the ventilator.

The funny thing about CPAP is that although it is less support, the equipment looks even worse than the vent. He's now wearing basically a soft "helmet" to hold the tubes/mask in place. It looks like an old-school football helmet! Also, with the mask, we can no longer see his cute little nose, but we finally got a better look at his little mouth! In this picture, he's sucking on a pacifier too, which helps him keep his mouth closed. (If his mouth is open it allows some of the pressure to escape, which makes the machine less effective.)

The move to CPAP actually happened a little sooner than expected. Over the last several days, the nurses noticed a small air leak in his vent tube. He was actually out-growing the tube, which resulted in a loose fit in his throat. The air leak was making the vent a little less effective, and obviously irritating him. He had become more and more irritated over a few days - not tolerating hands-on, wiggling around a lot, and desatting much more. I mentioned his big desats in the last post - well, they continued. Yesterday, my mom and I witnessed a very scary one - his oxygenation level dropped to single digits, and they needed to bag him for a minute or two before they could get it back up. He was definitely fighting the tube, we could see him basically tensing up and clamping down (not breathing) multiple times that day. After that episode, and an afternoon of more downs than up, the doctor decided to extubate him, and try him on CPAP.

Dr. K figured if they were going to have to put in a bigger tube, they might as well give him a chance on his own. Andrew's been breathing over the vent more and more in the past week, so there had been talks of trying him on CPAP sooner than later anyway. And, about a week or so ago, Andrew dislodged the tube himself one afternoon, and got a chance at CPAP for about 4 hours before he tired out. We hoped he would make it longer this time!

For the first few hours on CPAP, we weren't sure he was going to be strong enough for it. When we left last night, his oxygen requirements were super high - 90%. We were discouraged, worried to see him struggle, and felt for sure he'd be back on the vent this morning. But, when we called for an update around 8 a.m. we were pleasantly surprised that he made it through the night and lowered his oxygen into the 70's. When we got to the hospital in the morning, he was down to the 60's, where he remained for most of the day (when we left our evening visit, he was at 59%). The good thing is that he is much calmer without the vent tube - and while he is still has desats, they are small and he resolves them on his own. They won't let him stay on CPAP with super-high oxygen requirements though, b/c that is not good for him, so we are hoping that the first dose of steroids kicks in and allows his current requirements to drop even more.

We are really so happy that he has done this well breathing on his own. Even if he does have to go back on the vent, it is heartening that he's done it this well for this long. It's amazing how much stronger he is everyday. This boy just continues to surpass our expectations. The past few days have been a roller coaster, that is for sure. But, progress has been made! Keep it up, Andrew!!