Riley was stable overnight and for a few hours his sats even dropped into the mid-80s which encouraged everyone. However, at 5:30am he began to bleed quite a bit. In response to the lower volumes, his heart rate jumped into the 160s and his BP dropped. Since then he's lost over 800cc of blood from his left chest tube. They stopped the tPA and began giving him transfusions and albumin. He's gotten two units of blood to now. His vitals have stabilized and the bleeding is slowing.
Unfortunately this means the tPA therapy is not going to work. Even if we were making progress overnight against the clot, the bleeding is a sign that Riley won't tolerate it any further, and the doctors feel the bleeding risk is too high to continue trying. They're not even going to bother taking him up to the cath lab to see what progress was made (the cardiologist said that, quite honestly, it would just frustrate us to discover that it was working since we can't continue tPA). That means that the surgical fenestration was a failure, and we will have to write it off.
Strategy? Top priority now is to eliminate the bleeding and stabilize him. Then we'll continue to focus on recovery from surgery - drainage, removal of chest tubes, etc. If we decide to attempt a cath lab fenestration (or even surgical re-attempt) that can't happen for a few weeks until he's fully recovered and no longer vulnerable from surgery. Basically, surgery was a total failure, a total waste. Riley is not any better than he was before surgery. He is worse.
Thursday, March 29, 2007
Another strike
Posted by Ken Norton at 3/29/2007 07:41:00 AM
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24 comments:
Our thoughts and prayers continue to go out to you guys. We will hope for a speedy recovery from the surgery, and news of a positive next step.
we are sending our love and praying for the best possible outcome from this nightmare.
we love you guys
marisa and dave p
We are so sorry for Riley and for you for having to go through all of this, and for the pain, frustration and sadness and all of the other emotions we can only imagine you must be feeling now. We continue to put all of our energy into hoping for good news for Riley.
xoxo,
The Honikmans
I am so so sorry. We are hoping now for a swift recovery from the surgery for Riley. We love you.
Jude, Chris, Ruby and Elsa
Love and stregth are being beamed from all over the country to that little light" on the hospital bed in Calif. Know that all of you who surround him are being upheld in prayer
I am so sorry to hear about this latest development. I have to hold out hope that something good is going to happen soon. Riley continues to be in our thoughts everyday.
The Sommers
Just know you guys are doing the absolute best you can given your situation. Hang in there, Riley needs you. Much much much love, hugs, and squeezes.
I am so sorry for this frustrating situation. Is there anything I can do to help ease your burden? Do you have someone bringing you meals? I would be happy to arrange something for you. I could drive out to SF and take care of any errands. You are constantly in our thoughts and prayers.
Can't they try again in a few weeks when he's healed from the surgery? Maybe then the tPA will open up the clot without complication and they can try to repair the existing fenestration.
We are so sorry to hear this latest bad news. Hopefully his recovery will go relatively smoothly from this point forward, and that once he's recovered they'll find a solution to the fenestration problem.
Mike, to answer your question - in a few weeks the fenestration will be so clotted over that the tPA won't stand a chance.
Ken
I just don't know what to say :-( except that my thoughts and prayers continue to be with you every single day. I don't even know you, but seeing those pictures of Riley and knowing all he's been through just breaks my heart to bits. Riley is so strong...I pray for a wonderful recovery for him.
Thanks for the clarification, Ken.
All we can do now is look forward and hope they can resolve it another way. The thought of a wasted surgery is so painful, but it happened, and there's nothing to do now but put it behind us and look forward. We are praying for a quick recovery and better outcomes in the future.
Our hearts are breaking here for you guys. I dont know what to say, you have been through so much. We will continue to keep Riley in our thoughts and prayers and I will ask a friend of mine to please include Riley in her Prayer Group (since I dont personally belong to one myself, sorry).
Lots of love Jack, were here for you big guy.
Cassie and Brenda
We continue to pray for healing for Riley, for stength and comfort for Ken, Suzanne and Grampy as you are there with him. We love you and pray for good news and healing SOON! Love, Auntie and Stephen
P.S. - We keep publishing as anonymous as my Google account is not working right.
Family reinforcements are coming back out to SF soon. We will be there for all of you in any way we can. Keep hope alive. Love you all
Grammy and Wayne
It sucks........
Have they mentioned at any point when they would consider the Fontan take down. What about Transplantation?
I know we may not be there yet, but have they addressed those issues, and if not, they might be questions you might want to throw their way to get a time frame an scenarios.
Obviously its not the first thing they'll want to do, but just something to put back on the table.
i am so very sorry... so sorry... our prayers are with you.. love, the mcintyre's, mark,gina,kristin,ashley,cody,colin riley and isabella...
Since you mentioned the fontan take-down and transplant, wouldn't it be an idea to try the alternative PLE treatments like steroids. Sure they have side effects but can they be worse than the alternative?
I am sorry to just ask questions. I know we are only blogosphere aquaintances but I find it hard not to take a fixer mentality.
I feel how sad and frustrated you must be.
Hoping and praying for some positive steps today. Can't wait to get out there in a week to be with you guys. Love and hugs. Sending prayers from Kristen (Gray) in Buffalo, as well. Love, Auntie and Stephen
I don't know what to say...this news is obviously not great.Keep your hopes, strength and spirits up.Sending positive thoughts and prayers you way daily.Love you all,Melinda
Thinking of Riley and you all constantly & praying often!! Our heart aches for Riley and all that he is going through, and for your entire family! We are so sorry to hear about the setback(s).
We are sending you all our love and hopes/wishes/prayers for some good news soon. Positive energy for recovery is being sent your way (from everyone). We are so sorry for all you have to go through. We love you.
Joce, Tom, Naomi
You and Riley have been in my thoughts constantly. My thoughts and good wishes go out to you. This must be incredibly frustrating and painful for you.
Best wishes,
Judi E.
oh, man...I'm so sorry you're ending these hard weeks in this state. All of us at the goog hope it gets better soon for all of you...hang in there, we're watching and thinking about you every day.
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