Today was a scary day. Tomorrow will be a scary day. Rafi’s x-ray showed a subtle pneumonia. By the time we had a ct scan it was a serious pneumonia. So serious in fact, that Rafi is now intubated on the pediatric intensive care unit. As it turns out, Rafi was in respiratory distress and the doctors and nurses moved quickly to make sure we could be one step ahead of an emergent situation. Instead of waiting for the last possible second, and involved in a scenario where we had no control, it was decided to sedate Rafi and intubate her. We need to find out the cause of the pneumonia and treat it accordingly.

For the foreseeable future, a machine will breathe for Rafi. She will be drugged to the point where she is not in the moment. This poor child has been through so much. Thankfully she is strong and her general overall health will help her in her fight now. I miss her smile, her laugh and her comments, and it’s only been a few hours. I held her hand and there was no response. I want to hear her say “Daddy pick me up please” so badly it hurts. I am relying on her strength and her determination now. She is resilient and she will get better.

Tomorrow they are going to do several tests on her. She is going to have a bronchoscopy, a sigmoidoscopy and an endoscopy. The sigmoidoscopy and endoscopy are to check for acute graft versus host disease. The bronchoscopy is to try and diagnose the cause of her pneumonia. Basically, they are going to put a scope into her lungs, inject some fluid and then take it out to see if the cause of it is due to virus, bacteria or fungus. There is no guarantee that we will get an answer from this procedure. We are hopeful though.

We know these types of complications are not unusual for transplant. Rafi had just done so well to date that we were hopeful that we would be the odd case of a transplant without a complication. Oh well, it was not to be. Days are now measured in weeks but the hours crawl by. She will probably be intubated for weeks now. The damage in her lungs will take time to heal. We are hopeful.

Rafi is strong and she will get better. Until tomorrow…………