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.

Back in the saddle

Hello Friends,

It's been a while. Adjusting back home and having the energy to write have taken some time to get a rhythm going.  I'll start with my story first. I had one day to get rested and then headed back to my teaching post. The first steps out of my car and up those stairs to the main entrance were both exciting and nerve racking all bundled up inside me. Once I walked through the doors, it was like taking off a cloak from the past 5 months. There was a freshness to being back to work again. I was overwhelmed as I worked my way through the office saying hello to everyone again as the beginning of the school day was about to begin. It was so good to see my colleagues once again. The students began to focus their sleepy eyes on my face and realized that I was back in the building. There were a lot of hugs and smiles as I made my way down the hall to my classroom.

Unlock the door, take a deep breath, and there it was "The Routine" of getting the school day started. It was like I never left, engrained like a floorboard. Once the first period bell rang, I gave a brief back story of how Steele was doing and that I would be back to my regular schedule. There were smiles and my students shared their experiences with how the class was going and how it was good to be back together after a several weeks of uncertainty on both sides.

The day was pretty much a blur with all the story sharing and mental adjustments that I was trying to adapt back into teaching life. There was a lot of work to get my classes back on track and student behavior was a whole other animal. Take it one day at a time and begin piecing it all back together with what the students have learned.

Mr. Steele's transition is going fairly smooth. He is still using the NG tube for all his food and medications. He has monthly cardiology appointments at OHSU and Primary Care with Kaiser. We have expanded his care with Occupational Therapy and Speech Therapy to work on his mobility and oral feeding goals. Steele is about 2-3 months behind some of the benchmark developmental markers with his feeding and gross mobility. Lots of homework and practice to do. He is beginning to take interest in blended foods and continues to work on those anterior muscle groups. Steele has weekly appointments with both sets of therapists, so he is a hard worker and exhausted after those sessions.

Rachel and Steele are traveling back to LPCH on Tuesday, March 8th and returning the next day. Stanford wants to have a routine check-in to see how his hear and overall heath are tracking since our return. Stressful trip with all the flying, testing and return trip home in about 24 hours. We are praying that all looks good. It will be especially hard on Rachel since she is going alone. Luckily, we have our guardian angel, Jessica Engelson, to help with transportation and support. Thanks Jess!!

Ryleigh is enrolled in Pre-Kindergarten at a very close and convenient location. Rachel and I are undergoing which options would be best for her enrollment.  She's so good at adapting to all the changes that we have put her through this year, including her 5th Birthday a week after coming home from California. I am amazed at her resilience and general outlook on life. Everything seems to roll off her back like water. We love you so much Ryleigh!

Rachel continues to be steadfast and strong with Steele's care and stay at home mom for the moment. She has recently applied for a full time position wit Portland Community College. She has made it through 2 rounds of interviews and has her third interview on March 11th. Please send her your best of luck, this position is hers, she owns it!

More to come after Rachel and Steele return from Stanford next week. As always, we thank you all so much for your continued support and love towards our family!