THE INFORMATION WE WERE PROTECTED FROM...

Coop is doing fine this is just a very long and slow process. He has a slight fever and are running cultures now to make sure he does not have an infection. They are giving him some nitrate to try to help his lungs relax so that the pressure in his lungs is a little better. So just a few manipulations here and there trying to get things as perfect as they can.

I did find out some things today some of which were a little scary and some of which are heartbreaking. In the next few months Cooper will have to undergo multiple MRI's and hearing screenings. We will also meet with a specialist that will review Cooper's development both physical and mental for the next 6+ months. This is standard procedure for those who have been on ECMO. With the ECMO itself and the amount of drugs they are given there can sometimes be adverse affects. They do not foresee anything with Cooper as his head ultra sounds were all fine but it is still recommended. That information was scary enough but what else I found out was even worse. Only about 50% of kids that go on ECMO survive. In this past week here of the 4 patients on ECMO only 1 has made it, Cooper. There was this little boy that was a couple rooms down from us who was being taken off ECMO the same day Coop was. He was the first case that day. We had jokingly made it a little race to see who was going to be taken off first. When he returned I asked if he got off and they said yes. I was very excited and said that means it is a good day and was good luck for Coop. Then the next day he was gone and I had asked if he got to go to go to the "floor" which is the 4th floor where you go before you go home. I was told yes and I had said how happy I was for him. Well today I found out he did come off ECMO but he did not survive. No one had wanted me to know because they knew I had already seen one patient pass and they try to protect us from that. I felt so sad inside but also so lucky. We are very, very lucky to still have Cooper fighting his way through. Reality is we are one of the lucky families. So again I will ask for your continued prayers and for prayers for the families who are not as fortunate as we are.