Almost Nice

Today was a day when for a moment in time, I could forget that my son is fighting for his life. I could look at the monitor and was reminded of a time when his saturations were normal, his heart rate was normal. I could forget the planning we've been doing over the last week. Just for a moment in time. I am grateful for that moment, but saddened to come back to reality. Saddened to remember that we still need a miracle for Mason to come through this.

We weaned down a little more on the nitric oxide and the propofol. We started to wean down on the milirnone (a medication that may or more likely is may not be helping his heart). Tomorrow we will continue the weans and try to transition off of the IV drugs to doing more by Mason's g-tube. We've been able to wean down his oxygen to 91% with stable saturations - to avoid further damage to his lungs, we need to be under 60% and we're going down by 1% every now and again. For the most part, Mason's saturations were in the mid to high 80's today with times in the 90's. There were no scary times, just stable saturations. We were able to sit in the crib and watch TV and play with his medical "toys" a few different times. Bill was able to go home and do a few things at home without having to rush back here for the emergency. It was almost nice.

Reality does come back to us every now and again, though. There is planning that needs to be done. Arrangements that need to be thought about. Emotions that come through. At one point just a little bit ago, I looked at Mason's foot through the crib bars and realized that I am really going to miss that foot. It's so easy to take my mind away from reality, but so so hard to come crashing back. We, again, pray for a miracle.