This is taken from Charlie's CaringBridge page on July 14, 2014 at 4:46 P.M.
Several very wise friends have sent us this verse and it has been what has calmed us down over the last 24 hours. "God can do anything, you know-far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his spirit deeply and gently within us." After reading this verse and praying this for Charlie today I explained to the neurologist that they may witness a miracle.
Today we learned in the hospital you have ups and downs from day to day and sometimes even minute to minute. Every doctor has a different opinion and every test comes back with what seems like more uncertainty but knowing God is bigger than that is enough. It's enough just to get us through the day.
Today at morning rounds we were assured that Charlie was doing great. He took his feeds the way he should and was on his way to the floor (out of the ICU). We were excited but a little hesitant. When you are with doctors and nurses as often as you are it seems like they become family and you don't really want to move to meet a whole bunch of new ones. We were being taken care of but I slowly let that go and realized moving out of the ICU was a positive change for Charlie.
We went all day without any changes. Around 4:00 they began drawing blood for the genetic testing the Genetic Team requested to determine what is going on in Charlie's brain. There is a slight possibility that the damage to his brain is due to a lack of oxygen at some point but according to the neurologist that is highly unlikely. They said that the way the MRI presented and the care he has received here doesn't add up to a lack of oxygen. It seems like we are dealing with a genetic disorder. They have already ruled out all of the common disorders. They are now looking at more rare disorders that take 6-8 weeks to get results for. They send the blood work to institutions and research facilities that specialize in the different rare genetic disorders. It is amazing to me how God's hand is in all this and intertwining so many lives in this one story. All I can say is I am so thankful that there are such intelligent people in the world that can help get answers for us. All that said, right after a couple of the labs were drawn we tried to feed him. They thought he would be wide awake since they had just stuck him but he didn't seem interested in his bottle. We undressed him and tried again and were having no luck. I sat him up and his breathing became fairly labored. The nurse looked at him and listened to his lungs and said that his left lung didn't sound very good. We stopped trying to feed and gave him a minute to calm down. They laid him down and let him rest. He was still uninterested in eating and the labored breathing happened once more. Afternoon rounds were happening simultaneously and when they saw his breathing they decided on an X-ray to make sure he had not aspirated. Regardless of what we see on the X-ray we are sticking around the ICU. Charlie is worn out and as hard as it is to get your hopes up and then back down we all know this is best for Charlie.
This afternoon I was trying to encourage Charlie to wake up so we read, "Llama Llama Wakey-Wake". He wasn't interested but it was worth a shot! Hopefully tomorrow after a good nights rest and feeds through his ng tube he will be ready to move and start eating again! Here are our prayers.