March 2, Day 286, Saturday from the plane

Saturday, March 02, 2013
On the plane flying back to California. Good to go home for a week. Got a lot of work done at the office, but by no means caught up. Tax season is in full swing, and I need to be there to give direction regarding my clients.  I brought a bunch of work with me and ready to attack it on Monday.  Neat to see so many people who have supported and cared for us.    

Still a strange experience being in our house. Very quiet, everything in the same place I left it a month ago. But this time it’s different. I can actually see a possible end to this. A day we might actually be there. My outlook has changed now that Lindsey has had the transplant. It’s not this vast open sea of endless waiting, we can actually see the possibility of going home.  The big question is Sierra. Are these treatments working? Will the antibodies back off and quit attacking her heart? What if it is not an antibody issue? What if it is her coronary arteries? What if..what if..what if?!?  I sure wish the doctors would have shown more confidence that this will work.  All I can do is have positive thinking, faith in His plan and timing, prepare for the worse, and be grateful for what we have. 

Last week Sierra and I had a ‘worst case scenario ‘ talk. So what is the worst, worst, worst case? Another transplant.  I know this sounds crazy, but we could do it. Sierra is a teenager. More teenagers out there do stupid things making them possible donors as opposed to 9 year olds. I know a bunch of crazy teenagers back in Oregon that are flirting with being donors.  You know how you are.  Also, Sierra is a type A blood making it easier to match up than someone with O blood (Lindsey and Gage).

Crazy, but Stacy and I don’t have that ‘deer-in-the-headlight’ look when you mention transplant, Stanford, LPCH, and Palo Alto. We know the system (much to well). We know the doctors, surgeons, and social workers. We know what the commitment is and how a transplant works. We have a great support group in California and Oregon. 

Dr. Bernstein told us out of the 300 kids they have transplanted, about 15 have had to be re-transplanted. That’s 5% (there's the accountant in me).  He didn’t know or wouldn’t say how many have been re-transplanted as adults.   I am not saying it going to happen, nor do I want it to happen.  This is just my way of preparing for the worst. Anything worse than this is incomprehensible. We know of kids who have passed away from complications one of which had problems with the coronary arteries.

Her biopsy on April 4 will tell us a lot. They will look at her heart pressures and coronary arteries.  They will know those results immediately.  They will also do the usual tests for rejection which take a day or 2 for results.  Ole’ Dr. Perry could walk out and say everything looks fine, take a cracker and walk off. Or he could say there are issues.  Remember he is a man of few words, but we love him and the excellent work he does.  I have stopped trying to guess the results of biopsies.  There have been so many times Stacy and I were sure there were (or were not) issues and come to find out everything was fine (or not). 

So there you go. I trust in the doctors and their judgement. I have to, the human body is so complicated. Everything will work out.  I’m not just saying that, IT WILL. Many years from now we will look back and hopefully be able to understand and see the big picture. For now we hang on and push forward.

Stacy says Lindsey is doing well. You can see in the pictures the cute predisone cheeks. In the next few weeks Lindsey will be so puffy  you will hardly recognize her.  We will need to buy bigger clothes for about the next 6 months, then as they turn down the steroids, the puffiness will go away and ‘Lindsey’ will return.  Just know it is coming.  She did avoid the hairiness. The seizure she had related to the medicine made sure of that. The replacement medicine does not have the ‘hairiness’ side effect.  Her blood pressures have been under control, so that’s good.  But one of her blood pressure med's is causing her hair to fall out. So we are addressing that. 

I am planning on being here a week or so, then heading back for another week.  Tax season can be very demanding and hard on the family, even when we are in Oregon living like a ‘normal’ family.  

My parents are hangin’ in there. I know this has been tough on them. They have lived next to our house and for the last 8-9 months, they have looked at an empty house, just sitting there, so quite. Occasionally their son (the good-lookin' one) comes home and eats their food and drives their car, but then he leaves and it’s back to the quiet. Soon there will be kids running around livin’ it up!

Having said all this, I am very excited to see the family. For the first time since May 20, 2012, (286 Days ago) Stacy and I will actually have the entire family under one roof all night long. You can sit there and think about that!!

Boys on the floor, Linds in the single, Megan covering her head, and Sierra with thumbs up.