Transplant Conference Discussions

Owen was a star at Gymnastics this morning.  He took only a couple mini breaks and worked harder than ever.  Each week, Owen's therapist has students that come to observe and to gain more hours.  Owen is mister social and just loves meeting all these new people.  This morning there were "two womens" there to play with him.  He loved pushing them into the foam pit, having them bounce him on the trampoline (think don't crack the egg), and we played hide and seek.  It was such a fun morning and I, along with his physical therapist, am in awe of how much improvement he has made over the past year! 

I came home to a message from Owen's NP at Stanford.  I tried to call back to no avail, but they know me and ended up calling me back in 10 minutes.  Owen was discussed in length at their transplant conference this morning.  The overall consensus from the transplant cardiologists, as well as the surgical team was that we need to seriously consider transplant for Owen. 

The last time he had an official "transplant evaluation" was three years ago when he was just a little over 14 months old.  Since then, his medication has tripled, and quadrupled in some cases.  His oxygen has increased from 1/4 liter to 3 liters on some days.  They want to get the ball rolling and just be ready to list him at any time.

They want to see him in the "sooner rather than later future".  We are working for the last week of May, the days following Memorial weekend, or the second week of June.  Much sooner than I ever anticipated.

We will have appointments with the child psych team, transplant nutritionist, social worker, transplant training and the of course, PRA labs.  Owen's antibodies are extremely sensitized, so I'm hoping that over the past three years they have dropped considerably.

They know that I still have a million questions regarding further surgical options before looking towards transplant and all of those concerns will be addressed as well.  We also know the timing of Owen needing to be listed.  It's such a fine line to know when to list. 

Owen will need antibody treatments before transplants to lower his antibodies.  They use a series of IVIG treatments and in the first month, they do three aggressive treatments over a four week period.  I would have to relocate for that time to get those treatments done.  They have never worked with PCH (Phoenix Childrens) on pre transplant kiddos like Owen before.  They have been his primary cardio team for the past three years, so they want control over what's going on, and they know that I prefer them to be in control.  We absolutely adore our cardio in AZ, but he ultimately does what Stanford tells him to do, and he is fully supportive. 

We have to discuss with our insurance companies the option of life flight so we can stay in AZ while we wait for a heart.  Stanford has only let one other kid wait at home (more than 3 hours from the hospital) as a status 2 and that was Owen's buddy Chase.  We also need to fine tune post transplant care options, as well as perhaps having the monthly IVIG treatments done in Phx, rather than traveling to Stanford monthly while he waits for a heart.

After all is said and done, the conversation ended with the Fontan is still not ruled out.  We just want to look at a full timeline of the past three years, look at Owen's patterns and then look at the next year to three down the road.  We need to look at all possible outcomes and that is what I LOVE about our team at Stanford.  They are always looking ahead and want to be as prepared as possible. 

We may not list him immediately.  His heart function is better than ever for him, and his sats are better than they have been in years!  His energy levels are getting better and he's tolerating larger volumes of food.  His growth is in the 25% and his developmental delays are improving. 

  We will have a big visit coming up and we have so much to discuss.  It will be good to clear my mind of the million questions and concerns I have.  We are just so grateful for how well he is doing today.  I should hear back next week on the exact dates so I can get everything planned.  They have a lot to coordinate before our visit.

Whoa.. that's a lot to digest.