We spoke with Dr. Karl earlier this afternoon. He said that Fenestration was not an option at this point. So that leaves two options for Riley. One, he needs to completely recover and thrive off the ECMO (the best outcome), or he will have the Fontan take-down. There were some encouraging signs that Riley is comfortable and stable on the ECMO. After saying that they would wait until tomorrow to start slowly turning down the flows, Dr. Karl took a more aggressive approach. He turned the flow from 95%, then to 75%, and 50% percent. That means that right now Riley's heart is doing 50% of the work and the ECMO is doing 50%. This afternoon they needed to change the canister in the ECMO and he was completely off the machine for a short period, tolerating it well.
They are going to turn off the ECMO tomorrow morning (which means they'll clamp the flows, forcing his heart to take over) to see how he tolerates the change. If things don't go well, they will simply unclamp the tubes, allowing the machine to immediately kick back in. If he tolerates the work, they will leave him clamped off until they are certain he can handle the volume. One concern of ours is that he'll tolerate things well for several hours but will eventually decline again. Remember that he did great for the first 12 hours post-op before deteriorating. So it'll be more wait-and-see after the wait-and-see.
Ken & Suzanne
Sunday, March 26, 2006
Fenestration not an option, taking ECMO off tomorrow
Posted by Ken Norton at 3/26/2006 07:01:00 PM
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4 comments:
Continue to pray for Riley and you both and your family! Many extended friends and family from Buffalo & Canada send their thoughts & prayers as well. We're all keeping a close eye on Riley's blog & your messages. THANK YOU for the updates during what must be such a very difficult time. Hoping you are able to get some rest to help you maintain through the waiting. Praying that Riley is resting comfortably!! He is such a brave & strong boy!!
-Melissa (Jack's Neighbor)
I know how difficult all this uncertainty must be for you two. The two of you and Riley have been and will continue to be in my prayers. A word of encouragement-- Amanda went thru many times of uncertainty and many ups and downs during her 2 month hospital stay after her Fontan and she is doing wonderful now. Although I know that nothing anyone says can take away your feelings of anxiety just know that there are many prayers and it does make a difference!
Love,
Linda
I think the entire East coast, from Baltimore to Boston to Buffalo and up into Canada, is praying for Riley!
Ken and Suzanne, thanks as always for the amazingly detailed updates -- it's almost as if we're talking to the doctors ourselves! You guys are so on top of this whole thing... Riley is so lucky to have you.
Good luck tomorrow, and God bless you all during this stressful time. You know we'll be thinking of you.
hey you guys -- it just wanted to suggest something which is perhaps you may want to bring in some music. when isaac was on the ecmo we had all sorts of classical music (mozart, bach, beethoven, brahms, etc...) playing. we also brought in some bob marley -- sometimes the nurses had preferences. but i dunno... it couldn't hurt, and maybe he's receiving sensory input on some level. i know he's paralyzed and completely under but who's to say, you know?
go go ecmo, work your magic!!
much love,
Sarah
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