"it feels great" posted @ feb17 7:50 pm

it feels great. that was what Emily said two hours ago when she was extubated. She is now breathing on her own and filling up her wondrous new lungs. She is doing remarkably well .

The afternoon became very long and difficult. Filled with some pretty horrible pain. The weaning off of sedatives and switching to the epidural block proved to be a long painful haul. It took a long time to find a balance between letting Emily surface and have a manageable level of pain.  The last hour was epic. She first had to breathe on her own but while still intubated. This was hard, the more alert she became the more the tube bothered her. Gagging and hurting and in great general pain from the surgery. The last few minutes, endless, she wanted and needed that tube gone. Once removed she was stunned for a few minutes. We were too, watching her breathe on her own, deeply. At this moment the lungs are working beautifully. She still has great pain, of the level that very few have had to deal with.  The pain meds have been tweaked and as of a while ago things were tolerable. The night will be a challenge and tomorrow when she begins to get up and walk some she knows that it is going to hurt a lot. She knows this but is looking forward to moving. 

There is still a long path ahead but this is a great start. She has to heal the incisions externally and internally must also heal where the new lungs were attached. Perhaps the gravest concern is rejection of the new lungs. Emily has all ready begun a vast array of anti rejection meds and antibiotics and other. This morning she had five IV sites and eight bags and IV pumps  going at the same time. ICU will become day to day.

She has good spirits and attitude right now. She is a bit whacked out on the meds and bossing us all round and saying some pretty outrageous stuff. 

I think we all feel that this is the first hurdle was gigantic and up til now has sailed over it. This has been a most amazing last day and a half. Thanks for the support. While Emily was in some of her worst pain today she had me lean over of the rail of her bed and tell her who was writing and a bit of what was being said. She was squeezing my thumb, an old trick of her when she is in bad pain. One squeeze meant yes or good. As I mentioned each name or message she would give me one long mash and a slight head nod. ( Rhonda the nurse would gently say don't move your head Emily). After about 45 minutes of this she was starting to drifting off and my thumb was a new shape. More tomorrow. Before I could post this I was called back to the room and had the great honor of helping Emily stand up and she is now sitting in a bedside chair. She is trying to cajole them into a walk but will have to wait until tomorrow. This is incredible. While there I read her a bunch of messages, she truly relished them.

Keith