That seems to be the pace of this hospital stay. While the intensity of Isaac's discomfort seems to be less, he is still crying/uncomfortable most of the time...he has slept no more than 3 hours overnight at a time. Tomorrow will be focused on adjusting doses of medications and deciding which Doctor we want to coordinate care. We often work so hard on getting all the best specialists available on board to get the best care...but sometimes that creates gridlock with each doctor not wanting to step on anyone else's toes. Everyone has an opinion, a favorite medication or conviction about what the right way is to treat someone with severe brain damage. We need someone who has a similar philosophy of the value of life that we have...we need some one who will listen, who we can contact easily and who will not get tired of our phone calls. Managing this child's medications will be a difficult and ongoing job..we need someone to coordinate his care alongside of us.
It has been very quiet here at the hospital (except in Isaac's room!) Mark and the kids went to Church and then we met them in the lobby (they can't visit) so that they could see Isaac. We found a Little Caesars close by and picked up pizza and pop for 10 for only $25. So we ate "easter pizza" in the park nearby while Isaac slept back at the hospital. We had a very peaceful time..can't wait to share some pics. Maisy looked so beautiful in her spring dress and she knew it! The kids have been amazing during all of this. They have been helpful, compassionate and understanding of the limited time we have had to make their spring break fun. I have been filled with thankfulness for each of the children we have been given. What a life..these kids are the desire of my heart.