Sept 5, Sierra's biopsy

Another great day for Lindsey.  School, walks, play room, and a bit of cheese burger tonight.  She enjoyed skyping with her class back home.  Hopefully they can do more of that.  

Sierra has had a busy day. Blood draw at 7:30 am. School for a couple of hours, then back to the hospital for a 10:30 biopsy.  This was an annual biopsy which is more extensive than the normal 'run of the mill' biopsy.  They go in through the leg rather than the neck,  look at her heart pressures and coronary arteries, and take heart samples for both cellular and antibody rejection.  In a normal biopsy they just take a sample for the cellular rejection and none of the other stuff. 

In the past Sierra has had elevated heart pressures and signs of coronary artery disease (or shrinking of the coronary arteries).  Coronary artery disease is one of the main reason kids have to have another heart transplant or worse, don't survive.  We know of a child that was transplanted shortly after Sierra who has passed away due to coronary artery disease.  So, that is why Stacy and I and other heart parents get a bit anxious around annual biopsy time.

Having said all that, we had Dr Perry. As I said on Facebook, Dr Perry is a man of few words.  He does an incredible good job, he just doesn't have much to say.  According to Dr Perry, Sierra's arteries and heart pressures look good.  That's it... just 'good'.  Stacy and I want to know is it better or worse or the same as last year.  They are just 'good'.  So we will take 'good'.  We LOVE 'good'.  Tomorrow we find out the results of the cellular rejection and in a week or so we will find out the results of the antibody rejection.  If all is well they may even drop the predisone.  Predisone is the steroid that may be causing the slow growth and puffiness around her eyes.

After her biopsy, Sierra started her second dose of the IVIG.  This is a 12 hour IV to fight off the antibody rejection.  She had this same treatment 3 weeks ago and will probably get the same treatment in a month or so.  So tonight for Lindsey's walk we went down stairs to the Short Stay unit to visit big sister.  It was weird for Lindsey to be visiting her sister rather than the other way around.  At one point today around 1:00 pm both Sierra and Lindsey were getting echos done on their hearts at the exact same time.  You just don't see that everyday. 

Tonight I am getting Lindsey to sleep, then giving Sierra a ride home around 1:00am. Stacy is at the RMH with the other kids.  Haven't heard how our friends baby with the double Berlin is doing.  Hopefully good.

Megan is loving the volleyball skill evaluation.  She really wants to be on the 'competitive' team, not the 'just-to-have-fun' team. She thinks the practices are pretty basic and that she made it. Kids still don't know about Betsey and Logan coming to stay, so don't be blowing the cover! Should be an exciting day tomorrow.

Well that's the report. Another great day. Heading home tomorrow.

 Stacy holding Tristen, with Mary Burge, (our wonderful social worker) and Stephanie (Tristen's Mom)