After two days I have finally fully cooled off about the scan. I am happy we talked about it and I know if I really needed it I would push harder and it would happen. But a few days out I feel better about not needing it.
Kai is telling us what we need to know.
He is still completely comfortable and that is an amazing gift, but if I look closely and think back just a little, it is clear that things are not the same.
He is sleeping more and more each day. Yesterday we didn’t wake up until 9! And then he comfortably slept most of the day away snuggled up in someone’s arms.
He has started holding fluid in his face. When he lays to one side it all collects and he ends up with a puffy eye and a fat cheek. They said this could be from in the pressure, the fluid could be slowly leaking from his shunt site, and at this point I have to believe that is probably true. It doesn’t seem to bother him and it comes and goes, so there is really nothing to do about it except be aware that things are changing.
Ever since the scan talk we have really been considering the option of going home.
A week ago it was not an option for me. I felt safe here in the hospital. I felt free from being his nurse. I felt happy to be shut off from having to watch everyone’s normal life going on around us. I think in someways staying here makes this all feel a little less real. I don’t have to worry about anything except being with him and thats enough right now, but eventually its all going to catch up with me. Someday I will have to leave this hospital with or without Kai. Someday I will have to get in my car, Kai’s car, and see his car seat and his wheel chair in my rear view mirror. Someday I will have to take those things out of my car for the last time. I will have to take the pictures down from our hospital door. I will have to pack up his bag of cloths and blankets and toys. I will have to drive down the mass pike alone. I will have to face the outside world and the lives that are continuing to live on around us. But I realized that right now I have a brief window of time where I can do all of that with Kai, one last time….