Stanford 9/28/15

Every Friday is transplant evaluation day at Lucille Packard Children's Hospital (LPCH). The unit that Steele is actually in is the Cardiovascular Intensive Care Unit (CVICU) I'll refer to the new acrynoms often now that I am here. Yes, I landed in San Jose Saturday around 11pm. After speaking with Rachel about Steele's denial for a transplant last Friday and the emotional toll that she was going through, I called my good friend, Dave Prom, and he immediately booked a flight for me down here. Rachel and her friend, Jessica (Dorcas), picked me up and we drove back to the hotel for the evening. I could already tell that my life was about to change again. Rachel woke me up in the morning and we jumped on a shuttle from the Stanford Guest House to the LPCH. Luckily it was Sunday, which meant there was very little activity going on at the hospital. The Stanford Campus is incredible, I have forgotten how immense and sprawling everything is down here. Rachel helped navigate me throught the new labyrinth  at LPCH to the CVICU. Finally, I was standing next to Steele again. He was still intubated and on 3 pain medications, so he would respond to my touch, but not fully awake. It got emotional fo course, and I just held his hand for a while.

Rachel got the call that we could move out of the Stanford Guest House and into the Ronald McDonald House or RMH. The nice thing with the RMH is that it is a 10 minute walk with a shuttle that runs every 15 minutes to and from the LPCH. Really convienient. The thing that is not so great is all the construction that is going on near the property. RMH and LPCH are both building huge new facilities, so at about 5 am this morning, the heavy equipment and drilling starts. The RMH is mostly run and operated like a convential hostel house. There are private rooms for each family with a small convertable bench for siblings to sleep on. Each family gets a food storage locker and small refridgerator located in the massive kitchen space. They do not allow drugs or alcohol on the premisis, yeah right? I get their policy for healthy reasons. I will be arranging outdoor "Picnic's" starting around 3 or so off-site.

Rachel's phone was blowing up in the middle of the night. Steele's night nurse called and said that he had extubated himself. Yes, Steele was completely swaddled (no hands) and managed to arch his back and forth enough to force the tube out of his airway. I think he was trying to say, "enough with this thing". The nurse staff then had to hook him up to a passive breathing appartus or CPAP. Our nurse had only heard of one other baby doing that in her 7.5 years of working in the profession. Steele is showing them he's not going out that easy.

Today's goals are more rest and recovery from the self-extubation. Try and get a new PICC line in him for meds. His new team of doctors are friendly and extremely versed in all Cardiovascular ways of life. I was pretty fired up when I got down here about his care and recovery, but now I see what the bigger plan is for him. This is what they do. Trust in the process.

Back in July, I was using the languge of "One step at a time, one day at a time". That's where we are again.

Thanks so much to the Prom family and all my teaching compadres for building such a strong fence around my family right now.  We cannot do this wiuthout you guys!