Found out what the hold up was (which is all par for transplants). The heart is the first organ to be 'placed', then the other organs are 'placed'. In other words, locating the appropriate donor recipient. Since we were the first, it took most of the day to locate the others.
Now, at 7:00 pm all the organs are lined up and we can move forward. Once everything is 'placed' then Dr. Maeda receives the call to move forward which is 'usually' five hours before surgery. Soooo, now we are looking at midnight. It still could be delayed, but now it will be for other issues. Still a lot of excitement and anxiety in the air.
Sierra is receiving her IVIG in the CVICU. Found out what her biopsy results were... 1b (4 being the worse 0 being the best). That's good in the fact that she does not have raging rejection. But it bad in the fact that it doesn't explain why she has the high pressures. Now they will look at other causes, antibody issues, fluid, coronary arteries, all serious stuff.
In other news, totally unrelated, they had a 'Berlin' meeting among doctors and nurses. Believe it or not, a policy has been approved and in place to start in 2 weeks. This policy will allow Berlin patiences with trained parents to go on unsupervised walks. They can go to the Sobrato Room, play rooms, School, and walks. It was completely inspired by the Lindsey situation. We have suggested it be called the Lou Lou Policy. Quite ironic isn't it.
Honestly, I'm still sick to my stomach. I wish I could vomit, it would feel better. Haven't eaten much today. To wound up, mostly due to Sierra's situation, but when you add Lindsey and Sierra combined it can really stir up you guts. Sure hope they can get Sierra's condition under control. Never thought I would ever be in this position. Thank you very much for comments, love and support.
We are going for a walk down to see Sierra and get an update on her condition.
So happy Valentines Day Lindsey Lou.
Of course, I will update with any changes.
Physical Therapist, Mandy
Trying to ease the anxiety in both of us.
Sierra on her way to the CVICU (unbelievable)
John and Chloe, and Shaambak and Jowell
The 'Wall' with 239 stickers
Pep talk for the surgery from part of the team.