All and all, the week has been pretty good, pretty quiet, pretty boring.
Oakes has cruised through the week. No decisions were made about stents being placed. His airways actually sound a little better. He is peeing more, and his paralytic has been lifted. There are still lots of unknowns and decisions to be made, but as you all know, we love the boring weeks and that is pretty much what we have been given.
I wanted to share that tomorrow morning we will be participating in a fundraising walk here in St. Louis that is being put on by The Second Wind Lung Transplant Association of St. Louis. This is an amazing group that supports families that are dealing with all of the issues that arise with lung transplants. We have not been involved with this group directly, but we will be walking in memory of our sweet friend Elizabeth Ann Butz, who did not live long enough to get her lungs. We will also hold Ronan, Noah, and all of our CICU families in our hearts as we walk tomorrow. Of course, we will be walking for Oakes, walking for his angel donor and donor family. As we walk through Forest Park, with Children's hospital in our view, we will be taking deep breaths for Oakes, and thanking God for his lungs, for his strength and for his second wind!
After the walk we will be heading up to spend some quality time with Oakes. We have an amazingly special afternoon planned. Oakes will be taking his first trip to the rooftop garden! The garden will be closed just for the four of us. We will head up with a few nurses, a respiratory therapist, and possibly the attending doctor. We will be met by a photographer who will document the entire visit. Oakes has not opened his eyes since the paralytic was turned off so I don't think he will see the autumnal colored leaves and pumpkins that are decorating the garden, but I know he will feel the cool air, and the sunshine. He will hear the bubbling water, birds chirping and of course the joyful voices of Isla, Greg and myself. This trip has been in the works for a couple of weeks now, and has taken quite some work to coordinate. Actually, such a trip has never happened for a patient in the CICU, so we are thrilled to be the first. We are thrilled to bring Oakes outside, thrilled to do something normal, and as a family. We are thrilled to get family photos, and document our awesome little crew.
You can imagine that coordinating outfits are laid out, special blankets and props are already in the car. By the time this email update is sent out tomorrow we will likely be on the roof, soaking up our afternoon with each other.
I assure you, I will post pictures just as soon as I can.
Love to all of our friends, Becky
Isla, our little (Oakesie) tree-hugger!
Getting ready to walk to school. I was the teachers aid for the day. Not sure who had more fun, Isla or myself!