Nov 5, Calif trip, Gage's pacemaker optimization.

12:10 pm. Sitting here in Gage's echo and pacemaker optimization. This process takes two plus hours. I have to admit, it is really hard to not get anxious sitting here listening and watching them.  There are 3 people in here looking at screens, taking measurements and readings, and making adjustments.  One is doctor, and the two are echo / pacemaker techs. What gets me the most anxious is when the doctors says, 'That measurement can't be right, try it again', or  'At least we are consistent', or 'Wait... do that one again?', or 'I need to go review this'.  I can just feel my heart racing and that cold sweaty feeling with each comment.  I just hate to look at the screen with the picture of the heart. I know and try hard to avoid listening or watching what they are doing, but human nature and parent anxiety sometimes overrides and I listen in. I understand it does NOT do me any good. I don't even understand what they are doing, it is all very technical talk. The best thing for me to do is keep typing, review my e-mail, read my accounting literature, or anything to keep me busy.

Lindsey has had a fun morning. She has seen many of her favorite nurses including Kim P, Suzanne, Marissa, and Shannon.   She is at school enjoying the day with Kevin and the gang.

Megan is having some sort of fun get together with Abby Black, PK, Hanna, Mia, and other Palo Alto friends.

1:30, Pacemaker check is over. It's all good....I guess.  He sure looks and acts good. Next pacemaker check in 6 months and optimization in 12 months.  At this rate he should need a new pacemaker in about 3 years.  Sitting in doctor's office to review everything.  Just met with Dr. Kaufman. His heart is about the same. We are going to try pill form to simply meds. So really... all that chitter the earlier doctor was going on about, was just stuff. What I needed to hear is, 'It's about the same, see you in 6 months'. If it's important, they will let me know. ...And I knew that.

Sierra is in IVIG, should be done around 10 pm.  Tomorrow is biopsies for both Sierra and Lindsey.

Met with a genetic researcher from the Stanford side. They would like to study our family genetics some more. They now have the ability (and he proved it with a video clip) to take skin, expose them to the genes of stem cells. The skin cells become stem cells, which they then turn into heart cells. He then showed us a video clip of stem heart cells beating in a plastic dish. It was crazy. That's the kind of research they would like to do. They would like to recreate our kids 'sick' heart cells and study them. Of course we said they could.

 EKG, the beginning of the optimization

 More optimization

 

 

 Lindsey's turn

 Lindsey with a couple of her favorite 3 West nurses, Suzanne and Kim P.

And Shannon of course.

Sierra and Nori and her IV pole.