Gaining Strength, but Not Momentum

We enjoyed our first night and day in our new home and have settled in nicely. It's nice to have enough space to allow Mason to get down on a mat on the floor so that he can play and still have some room to move around the room. In the last room, we had to move the crib out of the way so we could fit the mat on the floor. Unfortunately, moving the crib blocked the us from getting around any other part of the room. We really love our space!!

Mason has continued to have some difficult with his saturations since decreasing the steroids the last time. We have tried to help him blow off more carbon dioxide, but this doesn't seem to be helping him out at all. Today was another day in the 60's and 70's for saturations while awake and primarily 80's while asleep. He has been asleep much of the day waking for a few big events including physical therapy and bath/bed change/trach change which truly wiped him out!

In his first PT visit while in the hospital, Mason showed the PT how determined he was. Despite being really sleepy (he did almost everything with his eyes closed!), he showed her that he could roll around, sit on his own and pivot around while sitting. When we tried to put weight on his feet, he adamantly refused and threw a 2 year old temper tantrum. While his movements are not as fluid as they used to be, he still knows what he wants and moves around determinedly trying to get what he wants. Within minutes after the PT left and we put him back in his crib, he pulled himself up to sitting - Nice timing, Son!! Then, to our complete amazement tonight, after his bath and trach change, we played on the mat again and Mason was able to hold on to my hands and take 1 good step and 2 attempts at smaller steps. I think he would have gone further if the vent tubing hadn't gotten in his way! We were so excited to see him stand up and take some steps. Progress is progress even if it is not on the ventilator settings!! What a fighter! I can't believe that just 3 weeks ago, he just woke up from being paralyzed and heavily sedated for a month and now is practicing walking again. I am so proud! Who knows, maybe soon we'll be able to take walks around the unit instead of wagon rides!

We continue to battle what is the right steroid level, ventilator settings, and oxygen concentration for Mason. We seem to be stalled for the moment and don't know if it's the steroids, the vent changes from last week, Mason's fluid status or what. He is definitely making his own rules as he goes along. We just have to pay attention to how he wants to play the game.

Rate: 35
Inspiratory Pressure: 18
Inspiratory Time: 0.65
PEEP: 10
FiO2: 63%