Transplant Clinic Coming Up

I got word from the scheduler at Stanford and we have an itinerary for May 29th.  Owen will undergo nine hours of transplant testing, as well as Carson and myself.  Starting at 8am, Owen will undergo echo, ekg, and then move to the lab to draw his PRAs (panel reactive antibodies).  Then we meet with child psych, social workers, lunch break, nutritionists, and then cardio clinic with Dr B.  We've always seen Dr Rosenthal, but he won't be in that week and I have heard amazing things about Dr B.  I noticed he was listed in the top 1% of pediatric cardios in a recent publication, and he is the head of the heart failure clinic at LPCH.  He works alongside Dr Rosenthal and has been fully updated on Owen's case and will have another meeting prior to our visit.  I am a little excited to get a fresh set of eyes on him and I am anxious to pick his brain.

 It seems unreal that three years ago, in May, we were having the same testing and consultations.  I wrote a post here about his "plan" at the time and it's not too far off from where we are today.  Most days I feel like Owen is a normal 4 year old and forget that he is sick.  The medicine, oxygen, therapies.. all of it is so normal.  Then I erase my tunnel vision and compare him to other 4 yr olds with HLHS, and the reality is that he is really sick.  I don't even try to compare him to healthy 4 yr olds because there is no comparison. 

I want to make the right decisions and do what's best for Owen long term, without compromising his quality of life.  I am going to go into this visit with an open mind and heart.  I will be the first to admit that I challenge every decision that is made and second guess.  I do trust all of Owen's medical team, but I also know that they are human.  I hope to come home from this visit feeling confident in the decision that we make moving forward. 

I still fully intend on obtaining a second and third opinion on Owen's case from two other top cardiac centers in the nation.  I am sure I will hear the same answers that I get at Stanford and that is what I am absolutely hoping for!

Thanks for all your prayers.  I have a feeling that this year is going to be a busy one!! 

PS.. Owen hasn't been in his stroller in a couple weeks!  He's walking everywhere and I just carry his oxygen like a baby in my arms.  He says "I am getting so strong.. I am a STRONG boy!!"  He has no idea how strong he is!!