We were successfully able to get him off of the ventilator this time. He was quite raspy and wheezy when he first came off of it but he seemed much more comfortable and less frightened than he did last time. He was on steroids for 24 hours prior to this attempt, which seemed to have helped him. The doctors and respiratory therapists monitored him and administered breathing treatments throughout the day and by the evening everyone- especially Emery- seemed to be breathing a little easier. He started on high flow oxygen- oxygen under pressure that blew up his nose- and was able to transition to just oxygen within the first day. He was pretty sleepy right after the whole commotion of removing the tube so he slept for a while.

Once we felt like he was doing well enough we we got situated so I could hold him. There weren't as many pumps on his IV pole here but it is still a bit complicated to get him transferred. He was very weak from lying down for a few weeks straight and his core muscles took a big hit with the surgery so he needed help to move anywhere. I held him in place while the nurse gathered up the lines and tubes to move everything to the end of the bed where we had a chair waiting for us. We had to be careful not to unhook his oxygen, which was on the opposite side of the bed from everything else. It was so worth the hassle though.

We sat together for hours and he slept in my arms. It didn't occur to me until recently, as Lainey has gotten so much heavier and taller, that I was actually very fortunate that Emery is still small enough to hold. Someday soon I will have to find a new way to comfort him and show him my love. I guess every parent crosses that bridge sometime. For now I am going to soak it up. I held him and praised God that he was still breathing on his own several hours after he was extubated and that he seemed to be getting stronger and breathing better throughout the evening. It wasn't until my leg started burning that I had to put him back up in bed. I thought it was just from sitting for so long in the same position but I found out later that Emery and I had matching chemical burns from the stuff they used to take off the grippy thing on his leg. It didn't seem to bother Emery but I know it must have been uncomfortable because mine was a swollen, red, burning, patch as bad as the worst sunburn I've ever had. It took about two weeks for it to go away. I guess we both have super sensitive skin. 

By that evening he was passing his toys back and forth again. You can see that his hair is getting a little unruly. I had planned on giving him a haircut at 18 months just for an even number. I like to get a good before photo and a good after photo since they never quite look the same after their first hair cut. Actually, he already had an unofficial cut when the PICC nurse shaved the sides of his head for his PICC line last spring. Those were his mullet days. Now he has a reverse mullet (all business in the back with his bed-rest bald spot and all party in the front). One of our visitors said it looks like we could do a double rat tail in the back since his hair on either side of the bald spot is so long and ratty. :) Oh well. That is one milestone I am refusing- at least so far- to do in the hospital. He will have a proper hair cut as soon as we get home.