Wednesday, December 23, 2009

The "p" word...

When our family went through this CDH battle, we would (and actually still do) talk about the "p" word. We got to the point where we didn't really want to say the word "plan" out loud anymore, because most assuredly it would be changed umpteen times between the time the plan was uttered and when the final action was executed. We also ended any timeframe with the "-ish" ending. (i.e. today-ish, soon-ish, noon-ish, etc.) The Gaynors are experiencing a bit of that now.

So since my last post, here is what was "decided" upon:
• Averi would be decannulated (with no bridging) if she tolerated the ECMO setting being at 150 tonight. She would remain on dialysis, which entails putting a dialysis cannula in place of the ECMO cannula in her neck. This would require a smaller amount of anticoagulants than the ECMO circuit did, because it is a lower amount of blood used. Additionally, they can switch to a different drug that would anticoagulate the machine... not Averi.

• Nurse said they would bridge tomorrow or the next day. The head doc will be in tomorrow and will make the call, so maybe the decannulation won't happen at 10am.

• Nurse definitely thinks the decannulation will happen at 10am if Averi does well overnight because the surgeon had already talked to the head doctor.

So she could quite possibly maybe be decannulated at 10am tomorrow-ish. Stay tuned on that. (But pray at 10am PST just in case she's in surgery!)

On a fun note, Averi has a couple of new nicknames! Her left lung is the size of a walnut, so she has been called "walnut" on more than one occasion. Hey, if people can call their kids "peanut," I think "walnut" is perfectly acceptable! A couple of the nurses around there have "adopted" Averi and have taken to calling her "Snookums." Averi even got her first little heart barrette the other day. :)

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