The cath lab fenestration failed, Dr. Moore was unable to get the stent around the conduit. Riley is stable and they were able to avoid bleeding. We were given the option of proceeding directly to a Fontan takedown now while Riley is sedated and intubated, or waiting until Monday so we can have a bit more time to discuss. We've decided to wait until Monday, Riley's 4th birthday.
We're going to talk to Dr. Tarnoff tomorrow about any alternatives and also talk about transplantation, although we've been told that any remaining surgical option is preferable to transplant. It seems that takedown is the last surgical option. We will also reach out to other cardiologists and surgeons who might offer opinions. Thanks for all of the encouraging words.
Friday, March 30, 2007
Strike three
Posted by Ken Norton at 3/30/2007 08:44:00 PM
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31 comments:
We wish we could be there with you guys, Love H,R J&O. We're so sorry this process has not been successful so far.xxxxxxx
Sending you all hugs and positive thinking...I also have a Posse of people with your family in their thoughts and prayers.Keep your faith,and though we are not there feel our presence with you.Try and get some rest to keep up your strength and spirits when Riley wakes up. Love,
Melinda and North of Boston.
We don't know Riley, but were told about your blog by a friend - our family will be faithfully praying for him and hoping to see good news in future posts.
Hi guys,
My heart breaks that the cath fenestration failed. I know you have lots of contacts for second opinions, and maybe you've already done this, but it might also be worthwhile to talk to the folks at Lucile Packard Children's Hospital. As you know, we (unfortunately) have spent a lot of time at LPCH and I would be happy to help put you in contact with the right people up there if I can. You just let me know what I can do. Anyway, I know you both have so much to think about this weekend. I am here for you in whatever capacity you need. Please call on me.........take care of yourselves.
love,
Gwynne
We are so sorry that this latest attempt failed. I can't imagine how hopeless it must feel right now with seemingly no options, but at least the cath was without complication and he's now stable. We're praying that the meeting with Tarnoff goes well and that they are able to chart out a new direction for you guys.
I think back to last year around this time, when Riley was on the ECMO and things seemed really bad. Takedown seemed imminent then, but you decided to wait, and he eventually recovered.
This time there's no ECMO, but the PLE is still looming... perhaps you can gain some insight on PLE in your discussions with other cardiologists (which I think is a really good idea). The mechanisms of PLE are so poorly understood, that consultation with other experts might reveal new possibilities. Maybe someone out there has a novel theory or treatment that is not yet in the literature.
At this point, the more expert input the better. I agree with Babs that Cleveland might be a good place to start.
As always, thank you so much for the update. We continue to pray for you all.
I am sorry. This is so hard for all of you. I hope you have help with your other little guy.
I think I would have done the same when faced with a decision on whether to proceed or wait regarding the takedown option. If you need any help researching second opinions I would be happy to help. I have also heard how good Stanford is.
Suzanne and Ken, I don't really know what to say that hasn't already been said. Every fibre of our beings is willing R to keep his strength and for something to fall positively into place. Know you are the best advocates for your wonderful son and that you have the prayers of so many people.
All our love
Jude et al
ps is there anything we can do to help grampy out at home at the moment? Would a visit from us all be a good thing? We could take him out for lunch/a change of scenery and give him a bit of help with Carter? Or we could just take Carter for a few hours if that would be helpful (we have Granny in town for a week or so, so have extra hands on deck)
sending love and strength to you all from up here in Oregon.
love,
Sarah
I've already been asking around from
our cardiac surgeons. We do only up to the Fontan, but here, we don't to transplant, but one of our well respects ECMO/Pedi surgeons reccomended Dr. John Mayer over at Boston Children's as a consult. Not only is he a transplant Surgeon, his research specialty is in Fontan outcomes. Here's his link.
http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&department=6&searchButton.x=14&searchButton.y=12&pict_id=9900960
Thinking of you guys
-Dave and Marisa
I second the Dr. Mayer comment. We're Boston patients (though not Dr. Mayer's) and we've heard fantastic things about him (including the "he's THE Fontan expert around here"). Please email me (erikarenee@gmail.com) if you want me to get in touch with our cardiologist and to try to get in touch with Dr. Mayer. We'd be more than happy to do whatever we can.
I am so sorry to hear all these efforts have failed. But on the up side, this is 2007 and if they can do things for a 110 year old I am certain that with technology they have some other option for this sweet, cheery 4 year old. These Doctors seem like they have a ton of knowledge and a huge support staff and I am sure they will find another option for Riley soon. May not be the optimum one they would normally use but I am confident they will find one and soon.
Our prayers will be plenty over the next days and a big happy birthday to you Riley.
Brenda and Cassie
We will continue to keep Riley and family in our thoughts and hope for the best outcome possible.
words cant express my sadness for you... i had a very hard time sleeping last night.. i prayedfor riley most of the night.. he will continue to be in my prayers... god bless you riely... gina
Hi Jude, I am a fried of Jacks from Canada. I am sure he could use a break, just the stress alone and if he is watching Carter a lot, I know he doesnt mind but he would never say so if he did need a break. If you do have some free time, could you please just go give hime a break if Ken and Suzanne dont mind? He may just want to go for a bike ride to work off some stress, or spend some extra time with Riley, or just some down time for himself, who knows. Thank you so much for the offer. We appreciate your support, especially since we are way down here and are of no use what so ever.(hope this didnt post more then once, had problems with blog this am?)
Brenda
We are sending positive and hopefull prayers your way. We are sorry that what seemed the last hope, has failed. But, we know Riley, and he is strong and brave even when we think things are hopeless. We pray that Tarnoff, and some second opinions/consults, will lead us down a very positive road. Love and hugs in Baltimore, Auntie Karen and Stephen
Thanks again for the phone call with the update although not what we wanted to hear. This will continue to be another tough weekend for you and we continue to pray for wisdom and for our dear Riley. Thanks to all who have already stepped in all along the way to help with Carter, give support and bring food. Love you all so much.
Grammy and Wayne
Riley continues to be in my prayers as well as his family. Ken, if you need to talk, you can always call
For Brenda
Yes you are very far aware and obviously unaware of all the support Ken, Suzanne and Jack have received all along this journey. Since March 5 "Friends" have stepped up to care for Carter, visit the hospital to lend emotional support, take Carter, visit Riley, arrange for meals every day. I am sure Jack needs a break, all of them do especially Riley. Jude's offer is wonderful, but do not assume that people have not been there all along. Ken, Suzanne and Jack have a rotating schedule (although exhausting) allowing each of them to have qualtiy hospital time, quality Carter time, and "rest." This is an exhausting ordeal for everyone. Being able to spend a week out there recently I was/amazed at what wonderful relationships they have with their friends and I am so grateful because the rest of Ken's family is so far away.
Yes the "far away family" is very grateful for those close who have lent support. Thank you all so much. We pray for strenght and wisdom to all.
The NJ side
We love you and are thinking of you. We are again so sorry about what you must be going through. I am glad he is stable for now and hope there is some good outcomes out there for you all soon. I will contact your posse here and see if I can be of more help (with Carter or anything you need)
Joce
We love you and are thinking of you. We are again so sorry about what you must be going through. I am glad he is stable for now and hope there is some good outcomes out there for you all soon. I will contact your posse here and see if I can be of more help (with Carter or anything you need)
Joce
I want you to know thatyou are in my thoughts daily. Riley is such a strong little boy. I send all my love and prayers to you all. Give Riley a big kiss and a hug. Wish I could be there to do something. Love Laurie
Hi Grammy Peg,
The only news I pretty much get is brief updates. I am forwarded to the blog mostly so this is where I get my info.
I do not want to assume anything. I know they have a huge support of so many via email,the blog, food, watching of Carter, hospital rotations for Riley, just to name a few. I certainly hope you didnt think I was minimizing anything anyone has done. If I offended you or anyone by what I wrote, that was not my intention so I do appologize if it was taken that way. Simply, if Jack needed a break, he would not ask for one, that is all. I thought her offer was very kind, nothing more, and I thought it was a great idea. And yes, Riley especially could use a huge break.
Sorry to have gotten your gander.
I myself have never met Riley or the rest of the family. I have however had the fortunate pleasure of meeting Jack many years ago and have told him several times how wonderful it is to have him in our lives even if it is only once in a while. we are not close friends, but I do consider him a dear friend.
I have been reading this blog for so long, and sometimes i stop reading it for short periods of time just because it is so stressful/depressing for me. I cannot even imagine what all of you must be going through with all this. Our thoughts and prayers go out to you guys every day as always.
If you want to vent/stress out you can email me at bttrhlf1@yahoo.ca if you want to, just put Riley Norton in the subject line.
Brenda
Sending positive thoughts and prayers your way.
Childrens Hospital of Philadelphia and Childrens Hospital of Boston are ranked #1 and #2 respectively for pediatric cardiology. CHOP does cutting edge stuff where Boston does A LOT of surgeries. Good golly, they have experience. Dr. del Nido is the Chief there. You may want to contact him for advice. He's an amazing guy.
{{{{{{{{{{BIG HUGS}}}}}}}}}}
One more thing, I noticed your cuz mentioned Dr. John Mayer at Children's Hospital of Boston. We second this recommendation. We are quite familiar with his work and his kindness. You can't go wrong with a consult from him.
{{{{{BIG HUGS}}}}}
Let's remember that this blog is about Riley (period)!!
We think about you all day and feel so bad that Riley is going through this. Please know we love you so much and wish there was something we could do to help... I wish we lived near you again so we could help you through this very difficult time. Love you, Kristina, Matt, Jack, Sam & Quinn
If I may, speak on behalf of my mother (Grammy Peg) and Brenda?? To defend my mother - I think she meant no harm, just may have phrased her post a little poorly. I believe she wanted Brenda to know, and wasn't sure she did, all that the "extended family" out in CA is doing for Ken, Suzanne, Riley, Carter and Grampy. To defend Brenda, you are right!! My father (Grampy) loves Carter and Riley so fiercely that he will continue to go, go, go without noticing what he may need. So, thank you for thinking of him.
Also, to "anonymous" who posted at 11:08am and said, "Let's remember that this blog is about Riley (period)!!" I am not sure who you are...and am sure you care for Riley. However, the blog is for ALL who care for and about Riley. Without the "support staff", etc. who post comments and prayers, our family would be lacking and that would mean Riley would be lacking things. So, this blog is for all of Riley's loved ones who do everything to keep the family (especially my brother, Suzanne and my father) going!! THANK YOU!!!!!!!
Auntie Karen
prayers and hugs to you from myself, dave p and my family(my huge extended family). we pray for you that there may be another route that helps our cousin riley improve.
we all love riley
i think that is what will prevail. you are all in our thoughts and prayers constantly.
Words fail me but know that you all are in our thoughts. As a matter of fact Jilly picked out a birthday present for Riley today while we were out shopping. We will bring it by Tuesday after Jilly goes for her heart cath. Hopefully we won't intrude, if so we can leave it at the desk for him.
The Sommers
I am the Grandmother to Sophia and I have sat in the surgery waiting room for many hours so I know you are totally filled with apprehension.
I have asked many prayer groups in my church to pray for your precious little boy and I can't begin to tell you how powerful these prayers have been for Sophia.
I am so sorry for your disappointment and will pray for a miracle.
Karen
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