Back in Portland & adjusting to our "New Normal" Part 1

Thank You CVICU!

Hi Friends of Team Steele!

All of us made it home to Portland, OR after an arduous drive with two cars and crazy weather. The process of discharge started about a week ago. Steele was held up due to the oxygen issue and his feeding volume. Rachel and I spent day after day negotiating the final discharge plan, which in itself can drive anyone crazy. We both felt that it was very important for us to leave LPCH as a family and transition back to Oregon.

After several discussions with Steele's Medical Team and countless hours of camping out in the hospital, a discharge date was set for last Thursday afternoon. Discharge is always a combination of a hundred different check marks off an endless list of tasks. Rachel and I did not shower or sleep for 5-6 days. I started loosing track of time between the hospital commitments and Ryleighs care. It's a very strange place to reside in, almost homeless in many ways. I would recommend keeping your focus on the end game. Get out of the hospital as soon as possible.

Our sleeping schedule was completely shredded. Communication becomes spotty, like buzzes and clicks. Rachel and I had to write notes down on a white board to make sure that we would remember important details and goals for each day, sleep deprivation taxes your ability to take care of the necessary elements required to stay alive. I set phone alarms as reminders to take breaks to eat, sleep, and stay hydrated.

On Thursday, January 21 2016, late afternoon, Steele was discharged from LPCH and cleared for transition back to Oregon! This was one of the proudest moments in my life. All of us were glowing. We were actually going to go home? Rachel and I were in shock and denial for about 24 hours. All of us walked through each ward where Steele received care from and said our goodbye's. Very emotional and cathartic are the words for that moment.

Wonderful Nursing Staff at LPCH

Rachel had started making arrangements for Sarah to travel out to California and help us with the packing and transportation back to Oregon. In the meantime, I was scrambling efforts to get prescriptions, packing up, and arranging for our travel back north.

We have met a wonderful family that currently resides in Menlo Park. Camillo and Hallie Colorado along with their four beautiful children, have supported us throughout this entire ordeal. We met the Colorado family through the Kirk House Pre-School, which is amazing! The Colorado's have family ties to both Oregon and Washington, so there was an instant chemical bond there. Hallie's Mother's maiden name is Steele. How crazy is that? Wow! Anyway, they were so kind and helpful to allow us to transport all of our gear in Menlo Park back to Oregon in their SUV that was not currently being used. Once again, I am blown away by the generosity and kindness that have led us along this journey. Thank you so very much Camillio and Hallie Colorado, we miss and love you all!

It's getting late and Steele needs his late night medications. I will finish the story in the next couple of days.

Ryleigh turns 5 tomorrow! January 28th.