KKI - Day 1

A long long day. I feel like we've already been here a week. Stepping off of the elevators onto the floor, I have to admit I was greeted by an overwhelming sense of dread. It's just such a long time to be here away from our family. All complaining aside though, I DO feel like these people can help Hudson, which is what counts. Today consisted of a lot of intake meetings. Each day I am given a schedule with Hudson's activities on it. He will have feeding sessions three times a day, with therapy and playgroups scheduled in between. Tonight was his first feeding session, which involved Hudson and I sitting in a small treatment room, being observed by his team through a two way mirror. Uncomfortable, yes. They were observing his behaviors as they are at home, it was baseline testing. He'll have two more sessions of baseline, one session where they observe what reinforcements work best for him, and then Saturday morning the actual feeding program begins. The nurses, doctors, and therapists have all been great. They made an excellent effort to get up to speed on the nuances of mitochondrial disease before we got here, so I feel great about his care here. Since he did test positive for MRSA, we were placed in a private room, but as soon as he has two negative cultures we're kicked out into a shared room. I'm enjoying it while it lasts! He is allowed to leave his room, so not super strict isolation, but has to wear a gown and can't go into the playroom if others are in there. Thankfully they cleared one of the playrooms out today and provided him with a one on one attendant, so he could play while I went to meetings. His attendant noted three instances of reflux with formula coming up to his mouth, which everyone seemed unhappy about. I'm really hoping reflux doesn't delay his treatment here. That's about it for day one. I've been asked by several people for our address here, it is: Kennedy Krieger Institute Attn: 3rd Floor Nursing Hudson Schaper 707 N. Broadway Baltimore, MD 21205