Still not exactly sure what's going on with Riley's condition. After rounds this morning, Dr. Tyndall (one of the cardiologists) came in to give us a very bleak outlook--Riley's not improving overall, fluid from drains is up, kidney functions not improving. He contradicted what Ian (one of the intensivists) told us yesterday that we could continue along this path for as long as needed, as long as there was no deterioration. Tyndall painted a picture that there are increased risks as we wait in this holding pattern with so many interventions and drugs, and that a decision would need to be made in the next day or two as to what the course of action would be--probably a Fenestration.
We told him that Dr. Karl (the surgeon) said he did not think Fenestration was possible with Riley's anatomy, and that the only option was the takedown. Tyndall said that he had not talked with Karl (argh!). After we talked with Dr. Karl again for clarification, he bascially said the pressure in Riley's heart is such that creating a hole between the atriums would not do anything. Rather, the blood flow would just ignore the hole and continue to the lungs. If the time comes when a surgical decision needs to be made, we would head back to the cath lab to see if conditions have changed that would make Fenestration an option. Dr. Karl doubted it would become an option. Still, Karl thinked that Riley looked good, regardless of what the numbers were showing. After that, Ian came in and told us how he thinks Riley is improving. I could only laugh because of my level of frustration after hearing three contracting opinions in the previous 15 minutes.
We are in the process of working with the social worker to set up a family meeting. This will bring several parties into one room where they will be forced to contradict each other in person and hopefully come up with a consensus on outlook and the path we are going to take. We are also reaching out to other doctors and cardiologists that we have met through Camp Taylor and other friends to see how we go about getting a second opinion. If it comes to a Fontan takedown, we want to be sure that there aren't other options being pursued at other top hosptials.
Wednesday, March 29, 2006
More uncertainty, mixed opinions
Posted by Mother in Chief at 3/29/2006 10:09:00 AM
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12 comments:
Oh boy, you are saints that you haven't screamed at someone yet. I'm glad you can organize this family meeting. Stay strong. Riley is blessed that he has such great advocates fighting for him. Love to you all. xoxo
Ken and Suzanne
I am so glad you requested a family meeting - I was just about to suggest this. That is what Russ and I had to do when we were at UCSF because, as you have been experiencing, everyone has an opinion and they are all different. It even got to a point where only one cardiologist and one intensivist were allowed to consult on Jillian's case and make decisions in conjunction with Dr. Karl because even during and after our family meeting the doctors kept disagreeing with each other.
Our thoughts are with you everyday, all day long. We hope positive things start happening soon.
Russ and Dina Sommers
Hey everyone, been checking in to keep in touch. We are so sorry to hear that things haven't changed much. Family meeting sounds like the way to go to get everyone, drs., surgeon, etc. on the same page. We continue to send prayers, hugs and strength through this very frustrating time and lots of hope for Riley's condition to show signs of improvement. Love Stine & Dave D.
Hey guys
Can't believe that you're having to deal with all this doctor disagreement on top of everything else. I really really hope that the family meeting helps. Perhaps it isn't surprising there is disagreement given the complexity of the situation but I hope that after the meeting the doctors could at least disagree in private and give you one message to digest. I will keep everything crossed that the meeting makes some difference.
I totally agree with one of the other posts about your strenghth, you are amazing keeping relatively sane under all the pressure - I hope you're managing to find some outlets for that pressure somewhere - it can't be easy.
Know we are thinking of you all the time.
Love from us all
The Lawrences and extended family
Hi Ken and Suzanne,
I have been constantly keeping up with how Riley is doing and my heart completely goes out to you in these extremely trying times. I know how it is to be on such a roller coaster ride (encouraging news from one source and discouraging news from another). If it's at all possible (since you mentioned getting a second opinion), I would STRONGLY recommend trying to talk with either Dr. Reddy or Dr. Hanley (cardiothoracic surgeons) at Lucile Packard. I'm sure you've already thought about this option but the two of them are world-class surgeons in pediatric cardiology. I'm sure Dr. Desai from Camp Taylor could help you.....also I have a really good relationship with one of the social workers at Packard. And I would be more than happy to talk with her about setting something up. Please just let me know if I can do ANYTHING to help you out. My phone number is (408)517-0201. Call anytime. I'll be thinking of you all and sending all my thoughts of health and healing.
take care,
Gwynne (Cassidy's mom)
Hi My Precious Family, Just read the blog and Wayne and I think you should explore all options even if it means second opinions, other Providers or institutions. Riley is #1 priority. You have all of our support. It is time for UCSF to stop playing the ego game.
Love you
Mom
Ken and Suzanne,
Organizing a meeting of the minds is a great idea. Get everyone together and let them talk it out. At the end of it, hopefully everyone (doctors included) will have a clearer idea of the big picture, and you guys will be better equipped for the decisions you might have to make.
A second opinion also sounds like a good idea. He's relatively stable at this point, so you have a little time to ask around. It can't hurt - and you may become aware of newer alternatives that might apply to Riley's situation.
Here, we're just hoping and praying for continued improvement, even if it's at a snail's pace. And we hope you guys are taking care of yourselves during this very stressful time.
It's me again- that chd mom that you don't know. :) I realize you guys are across the country from us, but my son, Jason, had his DORV repaired at Miami Children's Hospital, and the surgeons there are amazing. Maybe a phone consult would be possible, so I thought I'd mention it.
MCH is one of the few hospitals in the country that has a dedicated CICU. Everyone works as a team, and all cases are discussed at bi-weekly conferences by the entire group, so you don't really end up with conflicting info. There are 2 surgeons who do all of the chd cases- Dr. Redmond Burke, who you might have seen on the ABC show Miracle Workers, and Dr. Robert Hannan. Both are phenomenal. Really, they are the top of the top surgeons- especially Burke. The hospital is very into cutting edge procedures and techniques. Everything is state of the art. If anyone would have the latest info, it would be them.
Here is a link to the website
http://www.mch.com/clinical/cardiology/index.html
and here is one where they post their real-time statistics for surgical outcomes
http://www.pediatricheartsurgery.com/home.asp
And here are some phone #'s for the surgeons' office:
305-663-8401
and the hospital in general:
305-662-8301
The whole team is just amazing there. Dr. Bolivar is the intensivist we worked most closely with. He's wonderful, and he got Jason through a scary complication we encountered post-op.
Also, here is a link to a site kept by another MCH patient we met during our stay there. There son has tricuspid artesia, and has already had the Glenn done, and will have the Fontan done eventually. They might also be a good source of info. They are really very nice people, and if they can point do anything to help as far as info goes, I guarantee they will.
If I can do anything at all for you, please let me know. I'm so sorry you guys are going through all of this. My thoughts and best wishes are with you.
Lori Smith
keywestbride@yahoo.com
Hi all. Just sending my support, love and prayers to you. This has been a hard battle for you and for Riley. I hope and pray that you get somewhere with the family meeting. They can't keep giving contradicting opinions when they don't even speak with the others. Love you - kisses and hugs to Riley.
Our prayers and well wishes are with you all every step of the way. If you're still looking for second opinions, here's the numbers for Kadence's cardiologist and for the surgeon for her upcoming surgery. I think someone already posted some info about the surgeons at Lucile Packard Children's hospital so perhaps the numbers will be useful. Although Kadence hasn't gone through her heart surgery yet, we did meet with the surgeon (Dr. Hanley) and were thoroughly impressed with his expertise and knowledge.
Dr. Michael Griffin (cardiologist): 650-558-8280; Dr. Frank Hanley: 650-742-2925 (that's also Dr. Reddy's phone number).
All our best to Riley and to you all!
-Jayne & Randy Smith
For "BLEEP " sake, you guys must feel like your being pulled in all directions..... Sure hope they can come to an agreement really son for al your sakes. I cannot even begin to imagine the stess you guys are under. I get all teary eyed every time I read something in the blog. I feel for you all so deeply.
Best to u all.
The family meeting is a great idea. We did that when Amanda was in the hospital after her Fontan. I understand your frustration since I also experienced that. Good for you, for asking so many questions and for seeking second opinions. You 2 are Riley's advocates. He is lucky to have such wonderful parents. I am continuing to pray.
Linda
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