The Roller Coaster

September 6, 2013

I have never liked roller coasters.  Even as a kid, I stayed away from them, preferring the log ride or the ferris wheel.  I do like excitement and adventure:  seeing Great White Sharks, lions in trees, giraffes, penguins walking by me….but for me, that is not in the same league as the sickening roller coaster.  I hate the severe ups and downs, side by sides, the gravity pull, the feeling of being totally out of control.  I am on a roller coaster now.

This morning, Randy woke, he followed commands, they got him sitting up on the side of the bed.  He knew me, and squeezed my hand, and looked into my eyes. My excitement was over the top.  Rex was here this morning, and Randy’s brother Rexie has flown in from Chicago.  I hoped they would take the ventilator out, but now I find out if they do so, it will be a few days.  I just spoke with Dr. Kaza (and Randy has tremendous respect for her) with Ally and Wes so we could know the thinking of the transplant team.  They want to play it safe, and keep Randy a transplant candidate as long as possible.  ECMO has the potential to do that.  Even with the ventilator in, he can begin to sit up, do a little exercise in bed, and that would be much safer, Dr Kaza says, than risking taking the ventilator out.  The ECMO is doing all of the work of his lungs….they are estimating he has 5% or less of his lungs left which is not survivable.  He is in better condition than many, many lung transplant patients, but when they put him on “air on demand” (kind of the way a scuba tank works) he breathes far too fast.  It is better to let the ventilator breathe for him, she says, than to have him feel breathless and panicky.  Okay, we understand that.

Of course, this is a huge let down….but that is the way every day has been since August 2.   We hope and try to keep our spirits high…but there is always the down side. The only thing that is really going to help is lungs.  O lungs. The most common blood type. Lungs.  A pair of healthy lungs.  That is our only hope, and every day that passes increases his odds for complications…  Dr Kaza said that since he is a healthy guy (other than failed lungs) the goal is to keep him on the list.  His score has dropped a little because he is on ECMO and the ventilator, but he is still high on the list.  He has been here so long that the team knows him quite well, and they are searching for the right pair.

My friend Kim tells me Randy is now on the prayer list of the Dallas Cowboys…so many people have reached out or sent their best.  It is so appreciated.  It lifts our hearts.  Click to Tweet.

We are still waiting on a miracle.  Waiting for lungs, riding the roller coaster.