September 13, 2015

Steele's heart function has not improved since the last post. The regurgitation in the tricuspid valve is the biggest issue at the moment. Our cardiology team presented our last option at this point since he is simply out of options at OHSU. Steele and Rachel will be transported to Stanford's Cardiothoracic Transplant Center sometime in the next 4-5 days. We were presented with this as our last and final option for his recovery. Stanford will do their own evaluation of what he will need for a week and then choose a course of action which includes two options:

1) An emergency "Glenn" surgery, which is the second step in patients with HLHS
2) Install a Venticular Assisted Device or "VAD" that is an external pump which will keep his heart function going and wait for the donor organ to arrive. Then do the heart transplant surgery.

Rachel and Steele will be taking a private jet down to Palo Alto and then admitted to the unit. A special team will set-up Steele to travel with all his lines and medications for the duration of the transport. Rachel will stay in a hotel near the hospital until he undergoes the surgery and then we will be in a Ronald McDonald facility until he is cleared to go home. This could last up tp 6 months. Rachel gave her notice last week that she will not be able to teach for a while, I am scrambling to find a long term substitute so I can begin FMLA and travel south with Ryleigh. It would be really helpful if you could reach out to Rachel and make sure she is getting support from all family and friends. We are both anxious about not being able to be together as a family for a couple of weeks until we can sort all the schedules out.

Both of the surgery options are high risk and there is alot of concern around how successful his recovery will be. I have a friend in Portland who is an MD and has worked in both OHSU and Stanford's Pediatric Cardiothoracic Unit's. She has assured me that this course of action was the right thing to do and Steele is in the very best possible care possible on the West Coast. Stanford specializes in these patients and has access to many more resources than we currently have at OHSU.

So, here we go. The final door has been opened and now we must walk through.