The Kanis Family

Benjamin is doing a teeny bit better. His pressures are still the same 16 over 10. His normal pressures at home are 15 over 10 so he's not too far from his normal pressures. His oxygen ranges between 30-50% depending on how he's feeling, what he's done for the day etc. Right now they are trialing him off the bi-pap during the day for about 10-15 minutes at a time. He's only been doing it once a day since Thursday but he is doing ok off of it. They want to increase it to about 4 times a day over the weekend depending on how Benjamin does. He does seem to be out of the woods although a lot can happen in the ICU. It's just very slow going right now. Not a lot changes from day to day. We've been asked the question of when he will be able to come home. The answer is that we really don't know. Neither do the doctors know. Benjamin is a boy who does NOT follow any sort of normal. He just follows his own pattern. So it all depends on him and how his lungs are doing. The doctors know that they can't push him aggressively or it will backfire. Usually he gets really sick with a bang but he also gets better with a bang. So it could be a few days or it could be a week. We just don't know. He is getting agitated at times which is a really good sign since at first he didn't even have the energy to be mad. And when I was there on Thursday Opa Jake & Daddy stopped by to say hi on their way to the airport and Benjamin got really excited to see Opa Jake. The little stinker hadn't even smiled for me yet but was just agitated or sleeping and when Opa Jake walked in the room he was all smiles. "Hi, hi, hi" You made his day Opa Jake. He then tried to sit up but couldn't quite get up so we propped him up and supported him a bit. By the end of the visit he would sit up and throw himself backwards on the bed. It became a game for him. Which ended in a coughing spell but at least he had some fun:)

We are enjoying the sunshine today with our other 2 boys at home:) Our plan is to go in every other day to see Benjamin- myself during the day and then Gary the off night that I don't go during the day. This gives us a chance to spend some time with the other boys as well.