Deja Vu

We have once again returned to the land of withdrawal. I got a glimpse of it last night as Mason was "talking" to his aunt and uncle and then Staramama and Pom Pomp on Skype. I saw a bit more of it between 1am and 5am when he fought sleep and wasn't even soothed by his wet washcloth. Then, today, when nothing made him happy and frantically grabbed at anything he could find, I realized we were there. Apparently, a 10% decrease in his Methadone dose yesterday was too much. Thankfully, without any pushback, Mason's doctors were happy to go back up by 5% so that he didn't have to suffer through the withdrawal. I'm hoping with the slight increase, Mason can rest better and not be so agitated when he's awake.

Unfortunately, with the agitation and withdrawal comes a slow down in Mason's progress on weaning the oxygen. Today, during the day we were only able to wean him down by 1%.  Since he's been sleeping the last couple of hours, though, we were able to wean another 2%. When he's sleeping, he continues to saturate in the mid 90's, but when awake he's smack-dab in the 70's. I am hopeful when we get back to seeing the playful happy little boy, we'll be able to continue to come down on the oxygen concentration. The challenging thing is that this progress may also be complicated by another wean of the steroids. Mason did very well with the last wean of his steroids, especially considering he had a bunch of ventilator setting changes at the same time. Tomorrow we will see another reduction in the amount of steroids he is getting, so the next couple of days will be another test for his lungs. I again, say a little prayer for the success of the wean and hope that he will tolerate it without a worsening of his lungs.

Many of you may be wondering about how Mason is doing other than his oxygen and his saturations. When we thought we would be saying good-bye to him and decided not to resuscitate him should things go so wrong, we actually did have a couple of times when we thought we were seeing the end. We had a few times when Mason's saturations were dangerously low and may have affected his brain. We cannot be certain at this time whether there is a lasting effect or not, in part because we don't want to put him through the tests right now and in part because he is still on heavy doses of sedatives and narcotics. The one thing we know for sure is that Mason's eyes do not track together like they used to. Which eye is not tracking seems to change and sometimes they do line up as he looks at something. We aren't sure if the change is because of the medications or because of some damage over the last 2 months. Time will tell if this will improve or not. On the more positive side, we do know that Mason has retained quite a bit of his communication and motor skills. He remembers all of his sign language he used before we came into the hospital. He still likes to put the little caps to the syringes in a water bottle and despite a lack of coordination in his arms and hands, he can still get those little suckers in the small opening of the bottle most of the time. He still tries to help us give him his medications through his stomach feeding tube. He has regained his head control and is well on his way to regaining his trunk control for sitting. We are pleased at his progress in so many areas, but cannot be certain whether or not there is any damage to his brain. Time will tell.

Thank you to everyone for helping us get through this very difficult time. We are so grateful for the words of support, the prayers, and the other help we have received throughout this ordeal. I continue to pray that we will see slow and steady improvement every day and that Mason continues to tell everyone that he's not done yet!

Rate: 28
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 12
FiO2: 71%