Prayer Falling Like Snow

riday, February 26, 2010 9:16 PM, EST DAY 58

David and I had a nice, long day with MG today as church was closed due to the snow and James went to play with his friend, Acadia, and his aunt Maggie again. We still have a long road ahead and the longer the tube is in, the greater the chance that more swelling can reblock her airway and we are faced again with yesterday's options. The lows from scares like yesterday though are so low that relief from them feel like exaggerated highs. MG is doing well. We've noticed her discomfort in having that tube down her throat and now that we are aware of it, it is harder to watch. They are weaning her slowly over the weekend and giving steriods to prepare for extubation on Monday. Today was not without it's drama though. Around 5PM as we were preparing to leave, she extubated herself. She's quite fiesty and strong when she is awake and she yanked it out of place. This alarmed us all as she dropped and they tried to figure out why she was dropping until they listened to her chest and heard her wheezing. I was unhappy about this as reintubatin

g causes trauma again to her already swollen subglottis. She is now swaddled and so calm her heartrate is dipping a little but not too worrisome. She was also happy to have us hold in her pacifier for long stretches of time today.

Yesterday was an emotional day. The snowstorm brought beautiful large flakes that floated down blanketing the city. My sister said it was good luck as our other successful transfer and surgery happened during the snowstorm. She thought maybe it makes usually anxious New Yorkers slow down. I wondered if it was some sort of cosmic sympathy. David and I each had time alone with MG before her procedure, we gently laid hands on her and prayed our favorite verses and hopes for her. In the operating room, we prayed silently together and then read our verses to each other. I felt a peace come over me (I've heard about this sensation, but can't remember feeling it before) as I imagined and prayed for every inch of that operating room. Then I became aware that prayers from the outside were falling on me like the snow just as I was hoping my prayers were falling on the doctors and nurses and every inch of MG. Before we knew it an hour had passed (I was honestly amazed to discover I could pray that long without noticing). This in itself was a blessing to be relieved from the grueling wait. Dr. Guerstein came out twenty minutes later with photos of her airways and news that it was "so-so" but with the wider airway he was able to make and the treatment plan he prescribed, he was cautiously optimistic.

David got to "hold" MG for the first time when he was asked to levitate her body as they changed the bedding that she had peed on during her episode. I was jealous and am eager for her to transition to CPAP when we can eventually hold her to our chests.