A Valiant Effort

I apologize in advance, but I am not going to do justice to what happened today. I'm still trying to figure it out in my mind and thinking maybe putting down on the blog will help sort it out. Please don't misunderstand, Mason's doing fine, we just had, well, an odd end to the attempt to take him off of the paralytics. A lot of things happened all at once that are challenging to sort out. I'll try to start at the beginning, after all, according to Julie Andrews, its a very good place to start.

So, this morning during rounds, the attending physician was really pleased with the fact that Mason did so well yesterday and through the night. She thought that with the addition of the Clonidine patch, Mason was ready to try to be off of the paralytics for a bit today. Even if he was off for an hour, it would be so good for his body to be able to move some - it would help move fluid, move things through his gut, and keep his joints mobile. We all agreed, it would be good to try, but if it didn't work at anytime, to make sure we protect his new trach site and get him back on the paralytics immediately.

So, after Mama delayed to go home for a bit, the lunch hour came and went, and we were finally all ready, we stopped Mason's paralytics at about 2:10 pm. He started waking up fairly quickly and twitching around as the paralytic wore off. The first thing I noticed was that he stopped drooling - I realize this is kinda weird as a first thing to notice, but you've got to realize, he's had a river of drool despite frequent mouth suctioning because of his paralysis. I was so excited that he could swallow on his own! Mason held Mama's hand while he tried to wake up and figure out what was going on. He never needed his oxygen turned up from 73% and saturated in the high 80's and low 90's. His endurance was quite limited and he fell back asleep after about 10 minutes with the help of a little more sedative. About 5 minutes later, he decided it was time to wake up again. He started twitching again, opening his eyes a little further than the last time and again wanted to hold my hand. His left arm was waving about trying to grab hold of something. After a bit, it was Papa's hand he settled on and did well for another little bit.

About 45 minutes or so after turning off the paralytics, he continued to do the same thing, so Mama and Papa thought we'd try to help soothe him with a pacifier and a wet washcloth (his security blanket). Not a good idea! Mason, in his return to his own independence, got ticked that he couldn't hold the pacifier in or bring the washcloth to his mouth because the suction thing on his ventilator tube was in his way. Mason got ticked and started fighting against the vent helping him breathe and wanted to grab at the suction thing to move it out of the way. Unfortunately, fighting against the ventilator was not helping his cause so the respiratory therapist (RT) came in and turned his oxygen up to 100% (though, he never actually desaturated below the mid 80's) and began to change the settings on the ventilator to make him more comfortable. The RT was able to allow Mason to breathe on his own with a little CPAP support and he was able to maintain his saturations in the mid 80's. When the doctor came in, she was impressed at how strong Mason was (3 of us were fighting his arms to keep the ventilator on the trach) and how well he was doing with only CPAP support. He was working hard to breathe, but maintatining his saturations. The doctor commented on the fact that he was so strong despite being "paralyzed" and sedated for 2.5 weeks. What a fighter!

As we were holding Mason's arms down while the nurse was trying to restart the paralytics, Bill noticed what looked like a blister in Mason's left armpit. Once we turned on the lights (Mason does much better in a dark and quiet environment), we saw that he had 3 large popped blisters and some redness in his armpit, apparently from rubbing against something. We don't know how long this has been there, but are quite certain it was from the dressings around the PICC line in his arm. No wonder he didn't like to be on his sides - either way there would be rubbing of the blisters. So, we urgently called the PICC nurse to come and re-dress the area. It now has no adhesive on it, and is wrapped in gauze instead.

So, at the same time, I'm proud of my little guy and ticked off at the person who wrapped his PICC line and caused his blistering. A rush of emotion from concern for how he was going to do off of the paralytic, excitement that he managed his oxygen saturations without the ventilator settings, heart breaking sympathy for his struggle and pleading eyes while he's not being able to cry because of the trach, fierce anger for the person who hurt my little man when he's already got enough to deal with, and amazement at how well he tolerated his unscheduled "sprint" off of the ventilator. All of that took about an hour and a half. Man, I need a drink!!

Despite all of it, Mason is still doing well. He's saturating at 95% on 70% oxygen, and resting comfortably. I am so proud of my little man's valiant effort!