Two things I forgot to mention in my last post:
- Riley's records have been sent for second opinion to UCLA, Children's Hospital Boston, Children's Hospital of Philadelphia (CHOP) and Stanford. It takes some time for them to respond and they will either respond directly to Dr. Tarnoff or to us. In any case, things are in motion.
- Dr. Karl is back at UCSF and operating. We spared blog readers the details of this sordid affair, but Dr. Karl had come off of Riley's case and stopped operating due to "political reasons." It seemed like he was leaving UCSF for good. Looks like this has been resolved and Dr. Karl is Riley's surgeon again.
13 comments:
I live in walking distance of Children's in Boston. If there is anything at all I can do to facilitate your second opinion in person please let me know.
Liz (estillma@suffolk.edu).
Thanks for the update and it will be interesting to see what those second opinions have for you. Interesting about Karl... Hugs for all. Grammy Peg and Wayne
I just cried and cried with joy after reading this and the last post. It seems like there is finally some positive stuff going on for you guys. We are absolutely thrilled. Thank you for the pics of the heart camp, it was so lovely to see Riley looking happy and back to his old self. We continue to hope and pray for the positive. We miss you and hope to see you soon.
all our love
Jude, Chris, Ruby and Elsa
It's great to hear so much good news.....actually fantastic news, from you guys!! It was wonderful to see Riley and Ken last week at camp, although we really missed Suzanne and Carter (I hope Carter is back to 100%). All week Cassidy has been saying, "I hope that Riley is feeling better." At least I can tell her that he is now. I just want you to know that you all are still in our thoughts a lot and thanks for the update.
love,
Gwynne
It's so nice to see pics of Riley up and around at camp. He looks so good - what a recovery from a month ago!
We're happy to hear that all his numbers look good. Even the valve looks better - wow! Again, Riley confounds the doctors, but this time in a good way! We are hopeful that he will continue to surprise everyone on the Glenn circulation - maybe whatever it is about his anatomy that makes him a poor candidate for Fontan, also allows him to fare better than most on the Glenn. It's something to hope and pray for, anyway.
And it's great that you're looking at second (and third, and fourth...) opinions. Hopefully one of those doctors have had a case similar to Riley's and can provide guidance. And the timing for Dr. Karl's "sabbatical" was great - imagine if it'd happened a month earlier...
Anyway, it's so nice to see you all returning back to everyday home life. We continue to pray that the good reports keep coming.
How BIZARRE about Dr. Karl. They couldn't work it all out behind the scenes before creating all this drama?
This second opinion is for who will put Riley on a transplant list?
Did you learn anything else about distance requirements to get on the list? Like you have to live within a certain number of miles?
Love,
Babs
The second opinions are for general feedback on Riley's past and future medical interventions.
As for the transplant list, Riley's cardiologist would make a referral to Stanford after we've attempted the fistula and/or the aortopulmonary shunt. When you're on the list you need to be within an hour or so of the transplant center and then in the area for a year after the transplant. Fine for Stanford, but would require relocating if Stanford rejects us.
How awesome to have your Riley back!
Oh how nice to see the posted pictures."He looks fantastic!"
You must be on cloud nine 1/2 !!!
As always your all in my thoughts and prayers. Love Melinda
So happy to hear things have turned around and everyone is feeling so much better! If for some reason Stanford cannot take Riley and UCLA seems like the best option, I'd ask them about staying on the list but up in the Bay Area. A close friend of mine was on the lung transplant list at Stanford and lived in LA during the waiting period. She just had to be w/in 20 mins of the airport for the life-flight helicopter to get her to Stanford when the donor lungs were found. She lived in the patient apartments for about 3-4 months after the transplant but then went back down to LA and just comes back up for occasional post-op visits. Not sure if it would be the same timing for a heart vs. lungs, but it might be worth asking.
Anyhow, love to you all and if anyone can't make a trip out to Fenway with Riley, give me a buzz and I could take your place! ;-)
-Jayne
happy mothers day!
Hi. I saw that you are sending Riley's information to CHOP. Since you're sending his info for a second opinion, I would try Penn State Milton S. Hershey Medical Center in Hershey, PA. That is where my daughter is treated, and her surgeon has a higher success rate that the ones at CHOP. He's nationally recognized. If you're interested in checking them out, visit, www.hmc.psu.edu I hope everything works out! Don't think I am trying to tell you what to do, I just thought you might be interested.
I noticed Riley's photograph in a cubicle today, and the occupant told me Riley's story. I am participating in the annual Heart Walk in San Mateo this fall and I will be thinking of Riley. My hopes and thoughts are with him and those who care for him.
Best,
KC
Post a Comment