Feb 15, 2:40 pm, Friday, Sierra's report

Stacy and I both slept hard last night. I slept in the Sobrato Room and Stacy was at the RMH with the kids.  The nurse called me at 2:30 am because Lindsey was stirring but I never heard my Van Halen ring tone, so she gave up.  At 5:30 am she tried calling again and this time I heard Eddie jammin'.  Lindsey was and is starting to wake up more.  At 7:35 am she was finally awake enough and stable enough to extubate.  She was excited to finally get that thing OUT.  Since then she has mostly slept.  When she is awake all she wants are those little sponge sticks and ice.  Right now she is snoring like one of her uncles and needs to cough really good.  They keep telling us she is doing fine and progressing as expected. They are going to start some forced air to give her a boost with her breathing. Yes, it can be stressful if you let it.  At 12 noon, they rounded on her. Rounds these days are a little more (a lot more) extensive than the 'boring' ones on 3 West.  

Two more of her 3 West nurses, Jen and Christine, came by to say hi. Sure nice of them.

Boys are off with Michelle Hansen again, no school for all Palo Alto schools today, Sierra is hangin' out in her room, and Stacy and I are going back and forth.

I am still amazed it has only been 24 hours since she came out of surgery. Seems like so much has happened. A lot has happened, and a lot more will happen as she continues to progress.  Still think about and ponder the events of the last 72 hours. Living our 'boring' routine life feeling like this day would never happen. Then receiving the call, hurrying to Room 3241, the excitement of the nurses, the excitement of Lindsey, the tears that followed. "I did it Daddy". Then the 30 hour wait, the anxiety, playing games and going on walks, and the vomitting.  Sierra's biopsy and heart pressure results and admission to CVICU. Finally Lindsey's triumphant walk at 12:05 am on Valentine's day, the wait on the 2nd floor lounge, receiving reports through the night. Then the life changing experience of seeing the blue cooler, the reverence, the reverence of a funeral procession, but this time it was life being transferred, respect for the donor family we have prayed for, seeing the cooler go down the hall towards our Princess. Seeing the monitors as they were preparing Linds for the heart. Later seeing her with warm feet and good coloring. Finally getting some sleep and seeing the vent come out. All the while, Sierra is hanging out 4 doors down, waiting for results, waiting for an explanation, waiting for instructions.

(2 hours later)
I must remember those 'Highs and Lows'.   I can't let "the highs get to high and the lows get to low".   They finally rounded on Sierra, and here it is. She has elevated heart pressures, should be 7-9 and now it is around 30. This represents damage to the heart. This could be caused by cellular rejection, but she is only a 1b, so that is not it. It is antibody rejection, meaning the body is building up antibodies against the transplanted heart.  She has been treated for that for several months with IVIG but it is not improving like it should. It is to the point the heart is seeing damage to it from the antibodies.  Now they want to peruse plasma phuresis with additional IV therapy. This is a big deal and has had mixed results, often not working.

This regiment would include 2 IV meds to further surpress the system, surgically placing a central port line the size of her pinkie, having her blood treating through those ports, and additional oral meds. It is a 17 day treatment that will include some hospitalizations either here in CV or on 3 West and treatments on an out patient basis.  They want to get aggressive now before she begins to show signs of heart failure. If we wait, the chances of this working diminish. There will be a number of side effects including tingling, fluid on the lungs, further suppressed immune system, risk of infection, just to name a few. The way Dr Yeh put it, "We are trying to protect her 'graft' as long as possible". Meaning........if this doesn't work, she may end up repeating (replacing) all this. 

This report was given while Stacy was with Lindsey. Lindsey has been struggling with breathing and coughing up the junk. Linds is very miserable and uncomfortable. I could only look at Sierra briefly during the report.  She understood everything he was saying and what he was not saying.  I was strong but could feeling it coming. I had to keep it together in front of her and the rounding team of doctors. As he finished I stepped into the hall and completely lost it. The true reality of a heart transplant sunk deep, on a day of hope and excitement for our Princess. Nothing is guaranteed in this life.  I went for a walk to the bathroom to get cleaned up before Sierra saw me. She has to see our strength, not the lack of it. When I got back, Stacy was there and Dr Yeah was explaining everything to her. Thank goodness, I didn't know how to repeat it. Sierra had also been very emotional. We all did some big hugs and more tears. And that's it... for now.

So Sierra will be discharged. All the main doctors, Bernstein, Rosenthal, Roth, Yeh, Hollander, Kaufman, and doctors from the adult side, will get together to confirm this aggressive treatment. Options may include just the plasma phuresis and not the additional hard core IV's to suppress the system.   We have time, she is okay, she has been discharged. Then when they have had a further meeting of the minds, with ALL the big dogs, they will decide on the best treatment for our #1 Sierra.

Sierra is a rock star! She knows exactly what is going on and what needs to happen. She is here in Lindsey's room goofing around and supporting Linds in every way. Lindsey has to have and must have all the hope, faith, excitement and optimism in the world.

This is Lindsey's time and Sierra knows it!

I have a great video, but it's not working, check back later.