A to B and back to A

"I need some time to think about it Cardio Team..."

The trip to LPCH went as planned. Major kudos to Rachel for her bravery, patience, and for doing such an arduous trip alone. Steele's ECHO looked pretty much the same since the last post-surgery evaluation. Mr.Steele is growing and meeting his weight and height goals, but there is still a lot to distance for him to go before his heart function will plateau. Could be another year, could be longer, it's uncertain. His doctors can only say it's 50/50, which is basically translated " We don't know, until his heart is ready to tell us." Transplant will always be in the equation for the rest of his life, but the longer you can go without it, the more time he buys into getting stronger and bigger. This increases the range and pool for donors as you grow. I have read stories that include full grown adults into their late 30's with the single ventricle who are thriving to infants that need more than one transplant within the first 5 years of their lives.

There is so much development going on with technology in medicine where patients needing donor specific organs in terms of their size, density, and overall function may be available through other channels. 3D printing prototypes are being developed that may become a reality within the next decade for patients like Steele.

The silver lining in all of this is that Steele has so many sets of eyes on him, he will always have options between here and California. LPCH wants us to visit at a minimum of every 3 months if our insurance will hold the line with travel expenses. Rachel and I have talked about the possibility of what life would look like in Palo Alto, it makes sense to be close to LPCH. Is it possible? Sure. Do we feel comfortable making a move down there? Only if the right pieces fall into place. Jobs for both of us, turning our home into a rental property, saying goodbye to our friends and family? All of it a bit overwhelming, but reasonable in terms of Steele's care, and less stress with Stanford and OHSU.

If the third surgery is approved, it would most likely be handled by LPCH with another stay in California. If the surgery is not approved and Steele goes to heart transplant, surgery will happen at LPCH. Both roads lead to LPCH. When we started this plan over a year ago, we never expected to think about a relocation agenda. I have met several families from across the country that have made the move closer to the hospital just because of the security and absence of stress knowing that your a 20 minute drive to the best care for your child.

I am not trying to dismiss all the care that Steele is getting in Oregon, which has always been excellent, thoughtful and well done. I feel that the bigger picture has already been painted for him unless there are some dramatic changes in Steele's heart function in the next year.

For me, it's just an untold story that keeps shedding layers of planning and doing what is right for our family. This would bring my immediate family history back in full circle. My Grandfather and Grandmother raised my Mother, Aunt, and Uncle in Palo Alto. Life has a way of putting you on a path of A to B and back to A.

Good Night Friends. Love to you all.