(Maintaining a blog is so easy when you just lift your sister's entries...)Here's the latest about Cutes...
Hi everyone,
Avery had a good night and is having a good day as well.
Her Bi-VAD (Berlin Heart) is doing all the work it needs to. We started her back on some heparin last evening and will start on some aspirin and either plavix or persantine in a few days.
All of this will be to anticoagulate her blood toward preventing clot and fibrin formation in her Berlin Heart.
On occasion - (not infrequently) - the device needs to be "changed out" if clots or fibrin build up occurs. This would NOT require open heart surgery -they would only change out the "pump heads" which are all external - but they would likely do this in the OR if necessary since they removed Avery's mechanical aortic valve.
As for transplant - Avery is currently a "status 7 - inactive status" on the transplant list. This means we are in a temporary "holding pattern" for transplant in order to optimize her some more following her surgery on Monday.
This is very typical and we were told this would be the case following her surgery for a few days - a very temporary period of time.
Basically - if you are a status 1A and active - you need to be completely ready and prepared at any point a heart should become available to go to the OR. If you are not - then this delays precious time to notify other potential recipients - and this is precious time lost for all.
Avery will likely be re-activated by Friday - and she will return to an "active 1A status" -- thus -- keeping the hours" she has accrued on the list prior to going on "status 7/inactive" - so she starts reaccumulating time immediately.
As for how she is doing today -
She is much less "puffy" then she has been since her surgery on Monday - so the diuretics are doing a great job helping her kidneys to get rid of the extra fluid.
We are weaning slowly on her ventilator - which is great - given all the fluid she still has to lose.
Her nurse placed a feeding tube. We will probably start a very small amount of pedialyte to get her belly used to it and then start ramping up the high test calories in a few days.
Finally - we are planning to do a brief "wake up" test today to briefly see how she responds to us.
Dr. Fynn Thompson is very happy with how she has and continues to do.
As we continue on this journey - and hope, pray...and wait...we would like to ask all of you to spread the word about organ donation.
It is something that is rarely talked about - understandibly - not exactly "life of the party chit chat."
But organ donation is an underappreciated issue - especially when it comes to children donating to children! - despite hundreds of kids (and thousands of adults) whose lives can be saved each day.
If we have learned nothing else over these past 5+ years it is that life takes unexpected turns - and despite our best efforts - we have little control over much of it.
The best we can do - is take what we are faced with and do the best we can - hoping that even in the worst of times - we can somehow make a positive difference.
We will never understand why Avery has had to endure so much - but have full faith she will continue to inspire and teach us for many, many years and get back to her "childhood" - because mom and dad need a break before the adolescent years!
We also do not subscribe to the "every thing happens for a reason" gibberish - because no explanation in the world could make sense of what these kids go through.
But since we cannot change the "why's"...we can at least impact the "what and how" and all make a difference!
So today - tomorrow and whenever you have an eager ear to listen - spread the word about organ donation!
Check your drivers license, talk to your children (if they are old enough to understand
We underestimate what our kids can understand - and sometimes in a much clearer and simpler way.
You never know.... your message could save a life someday!!
xoxox
Cheryl and Mike
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