To Be Alive without Breathing

Thursday, January 21, 2010 11:22 PM, EST

Day 22

Grace has been a bit erratic on her oxygen saturation again today. It's really hard to be there when she's having one of her "episodes." Again, the doctors and nurses tell us it's totally normal. But it's just about darn near impossible to sit there calmly as your daughter writhes a little bit and the blinking numbers on the monitor show her oxygen levels dipping precipitiously into dangerous zones.

Beth and I have found that our daily moods have a lot to do with whether Grace is having one of her episodes while we're with her. Beth caught one today. I didn't. She had a rough day. I didn't.

But we are still both admittedly worried. The general mood around Grace's condition seems to be very cautious. Doctors are still encouraging and believe that she'll keep coming down off the ventilator. But every day with the de-sats and the slow progress raises questions about the size, flexibility, and capacity of her lungs.

We've heard lots of stories of little ones being on the ventilator for 8 weeks, 10 weeks... so we know this is not unique. But we also know stories of kids who came off after 2 or 3 days and never had the struggles she's having. In the shadows, lurking behind our anxiety, is the fear that her lungs will not develop along with her body. We talked about that a bit together tonight.

Folks have commented to us how positive we are. But the truth is that we are still very scared. We believe Grace will come home with us. But there are days when our fears take hold and we worry that she won't. It's during these times when your prayers mean the most.

DL

Rev. Dr. Martin Luther King, Jr. said "To be a Christian without prayer is no more possible than to be alive without breathing." Grace is reminding me that sometimes we need assistance with both. ~ BW