Stanford

September 24, 2015

Steele and Rachel were sent down to Stanford's Pediatric Cardiology Thoracic Unit on Tuesday (September 22nd). On Monday, September 21st, Steele had a tachycardia event, which sent his heart rate into the 200+ range. This meant he was to be intubated once again and put on sedatives to calm his heart down. At that point we had been waiting for 5 days to get transport down to Stanford's Hospital. He was stable, calm and happy until Monday morning. It takes an event like tachycardia, to spark the staff into moving him. I cannot believe how our heath care works sometimes. Frustration, anger, anxiety and rapture are the words that come to mind and a few other four letter words that I won't use.

About 9:30 am we got the word that Stanford was ready and we could begin the move. The PICU staff informed Rachel and I that we had 4-5 hours to get ready. Rachel left to get her belongings from home and I stayed with Steele. 20 minutes later the Panda Team (Emergency & Transport Specialists) showed up and asked if we were ready to go? Unbelievable. The one thing I have to say about our hospitals is this, they do not know their right hand from the left hand most of the time when it comes time to help navigate a time frame.

Rachel returned to the hospital after a couple of text and phone call exchanges, I began collecting all of our belongings into whatever bags were available. As soon as Rachel returned, the Panda Team began moving Steele on the rolling space ship that would keep him alive for the duration of the trip South. I asked the driver if I could meet them at the Aurora Airport to say goodbye, he put the coordinates in my phone and I flew down the highway to the Airport. I managed to beat the ambulance and met them at the gate, drove to the hanger and helped load up the gear for travel. Steele had his own Pilot, 3 Paramedics, and Rachel for the ride. It was another emotional goodbye for us. I drove outside the airport to the end of the runway and waved goodbye as they flew overhead.

Rachel called around 6pm after Steele had been admitted to the Lucille Parker Children's Hospital at Stanford. He was stable and the new medical team immediately began the poking with the needles. Steele has had more holes in him than a swiss cheese factory. It makes me furious how much they have to stick him. Kaiser booked a hotel for Rachel that was an hour bus ride away, so she decided to try and find accommodations at the hospital for the evening. They put her in some awful room that had the air conditioning blowing around 60 degrees and a set of sheets that did not fit the mattress. She wanted to be near Steele in case anything went wrong, but the conditions were so uncomfortable, she opted to check into the hotel for the evening.

Steele's Custom Ride to Stanford

After finding out the news about the lodging and no transportation issue, I immediately started making phone calls to Kaiser. Rachel is being moved closer to campus with a shuttle service this evening. We were on a conference call with Steele's Case Manager this morning for an hour going over the details of Heart Transplant Patients. It's too much detail to go into, I'll just say we have a long road ahead still.

We should have a final plan on October 2 (Happy Birthday Bren!) for Steele's next steps. The entire Stanford Team meets every Friday for an assessment of their patients. I am driving down to Stanford on 10/5 for a couple of weeks. Ryleigh is staying in Portland with Saa Saa (Sarah Sanchez) until I can return on 10/14.

So begins a new chapter in Steele's Journey.