June 22, Friday, Day 3, Dopi must have helped.

12:45. So the Dopamine must have helped yesterday.  She slept till noon and felt better yesterday.  Still eats lousy, couple bits for meals at best.  This morning she ordered a hard boiled egg (the way Grandpa Bingham makes them), yogurt, and juice.  She had 1/2 an egg, 1 bit of yogurt and a little juice. That is about average for a 'good' day.  Her energy level comes and goes. She will be happy, perky, playing the wii, 'jabber jaws',  up and around.  Then it's as though someone pulls the plug.  Quite, no energy, no appetite, just stares off into space.  So I am trying to not let her 'highs' get me to high, because I know the 'lows' are just around the corner. Few steps forward, few steps back, keep the faith.
Slept much better last night.  Slept till about 8 am.  We were expecting a phone call from her but it never came.
Just went on a good walk.  This time we went 3 times around the unit.  That's a new record.

Talked the doctors on rounds.  No major changes to meds. Still adjusted Heparin levels for her blood clot, we should be off that soon and using coumadin.  They still want to get her to the 3rd floor, still need a few more 'good' days before they will let her go.  Honestly, I am good with that. Keep her here as long as she needs.  They did an echo on her little while ago.  You can see the blood clot really clearly in the picture.  It is about 1.5 cm round sitting in the bottom of the right side of her heart.  They say it should just stay there till transplant, no real danger right now.
Sierra, Gage, Renee and Randy are on there way from Utah.  Lindsey is excited to see her sister and little brother.  Gage will be pretty wild here in the ICU.
The adult cardiologist called regarding the echo's Stacy and I had done a few days ago.  Our hearts look and act complete normal.  No issues to note.  This still blows my mind that 3+ kids have the same heart disease and the other 2 have issues to watch, and Stacy and I are completely normal.  The genetic testing should be back in about a month.  They are also testing for 'hard metals' in Lindsey's urine.  Still looking for clues.  Once we get the water tests back on our house water, they would like to get the report on that too.
The SF Chronical came by to do an article on Mary Burge, our social worker.  She is a wonderful lady who helped us with Sierra and now Lindsey.  They wanted to interview us and hear our story and our experiences with Mary.  The article should be out the 2nd week of July.
Still mentally preparing myself for the Berlin Heart. Hard to image her going 3-6 months on these meds without mechanical support, but maybe. Regardless, I firmly believe she will make it to transplant.
Thats it for now,
Jason

 Lindsey and the parade on the 3rd lap around the 2nd floor unit.

Picture of the echo/ ultasound of her heart.  You can see the blood clot in the bottom left side.

Lindsey and I playing the wii.