Bruchgefahr!

(excerpted from my sister's carepage website this weekend)

Saturday news...
Hi everyone,
Avery had a stable day on ecmo. Nothing new - which is good.
Her chest x-ray looked even a little better than yesterday - so keep the prayers for clear lungs with low pressures coming!!
She is still on schedule to receive her Left Ventricular Assist Device L-VAD) on Monday.
There is a huge black metal box in the hallway with the word "Bruchgefahr!"
in big red letters.
This means "handle with care" in German.
This box contains the artificial heart pump for Avery.
Of course to hear Mike exclaim this in his best German accent is a whole other experience :)
Mike - who vowed he would NEVER carry a beeper - now has his very own - courtesy of the transplant team! This way - we both can be reached anytime -
when the most important call we will ever receive - comes!
We went out for Chinese tonight and my fortune read:
"you will get what your heart desires"
We sure hope so!!
Keep praying!
Here is to a peaceful night with the exception of our phone ringing.
xoxox
Cheryl and Mike


Sunday news...
"From Hungary...to Ghana...to Avery..."

Hi everyone,
Another nice quiet day in the CICU with Avery.
Her chest x-ray is unchanged (which is good)
She is scheduled as "second case" tomorrow for the operating room - which means she probably will not go for surgery until about 12pm. Dr. Fynn Thompson said he wants to be fully available post operatively to monitor her - so this will free him up for the remainder of the day tomorrow.
She looks beautiful today and when I whispered in her ear and asked if she could hear us talking she knodded "no"....:)She is sporting a princess bun with a big pink bow that says "Bruchgefahr"! all over it in hot pink marker with fancy hearts :))
We will keep you posted.
In the meantime - I have placed a couple of links about Avery's surgeon Dr. Fynn Thompson for you to learn a little more about this amazing man.
http://abcnews.go.com/GMA/story?id=5487217&page=1
http://childrensinghana.typepad.com/childrens_hospital_boston/profile-1.html
xoxo
Cheryl and Mike

The latest news about Avery's progress...

"Good Friday"....
(excerpted from my sister's carepage website)

Note: The photo is Avery enjoying the ocean last summer.

Hi everyone,

Avery's chest x-ray this morning had more fluid - so she went to the cath lab today to help decrease her left atrial (upper chamber) pressure that can be causing some of her high lung pressures and fluid (backup)in her lungs.

Dr. Lock dilated the stent between the atria (2 upper chambers) from 7mm up to 10mm.

Our hope is that we can further work on clearing out her lungs over the weekend to place them in the best state possible for her L-VAD (Berlin Heart)on Monday.

Her chest x-ray tonight already looks improved so keep those prayers coming!

Also - as of 2:22pm today - she was officially "Listed" with the UNOS (United Network of Organ Sharing) for a new heart.

She is classified as a status 1a within Region 9 (New England). This includes Ma, RI, NH, Maine, CT, Vt.

Status priority goes from 1A (first priority) to 1B and 2.

As long as Avery is actively listed - she will always be a 1A based on ecmo - or the Berlin Heart.

Children's Hospital is the only pediatric transplant center within the 6 New England states - so she is top priority for this area. While we are not allowed to know who - if anyone - is on the list "before her" - since we have been in the cardiac ICU for months -in the only center that does transplants - we are pretty sure she is in a good spot:)for our region.

Since Avery is O+ - she can only receive a heart from an O+ donor.
This places her at a slight disadvantage if there is a heart that is A, B or AB - HOWEVER -
O+ is the most common blood type - so this balances out her compatibility quotient.

Also - because she can ONLY receive an O+ heart -
if she were waiting among others of the same status (1A) and an O heart became available - she would receive it first- pending the size was appropriate - because she cannot receive any other type.

She can also receive a heart up to a 2,000 mile radius - if she is higher priority than others on the list based on her being on ecmo - or soon to be - the Berlin heart.

As for her right now-

She looks beautiful and is sleeping comfortably.
She was almost wide awake when she came back from the cath lab today - which is somewhat frowned upon - when you are on ecmo - since you do not want to move the cannulas (the tubes in her leg).

She was trying to sit up and put her legs over the bed.
We quickly sedated her and made sure she was comfortable - but not before Dr. Lock stopped in to check on her.
She pointed at him and pointed to the door - basically - throwing him out of the room.

His response:
"It's good to see she still has her senses" :))

Dr. Lock also very kindly offered Mike and I Red Sox/ Yankees tickets for Wed and/or Thursday night.

This was prior to Avery going on to ecmo this week- but such a kind gesture!
We told him we would take a rain check - but thanked him for thinking of us.

(editors note: the "we" in "we told him" was Cheryl)

So - with that said - we will say good night and ask to continue the prayers
"Clear lungs with low pressure" !!

Thank you all xxoxoxox
Cheryl and Mike
"Team Supergirl"

Avery rocks!

My heartfelt thanks to all of you who've kept my amazing (if I do say so myself) niece --and her parents & family -- in your thoughts and prayers this week. She was in surgery for 10 hours to work on her left ventricle and also to receive a mechanical heart valve. She will be sedated for at least another 24 hours, but her stats have been great and I've been told she looks excellent. FYI - she frequently looks very puffy and swollen for many days after her surgeries, and my sister and mom have been particularly pleased with how she looks this time, which is one of many signs that her heart is working better than it was before the surgery.

She still has another procedure ahead, and depending on how her stats hold up once she is awake and moving around, it may be done before the Christmas holiday (before scar tissue can build up), so I will continue to update you all on her progress and to ask for you to continue to keep her close in your hearts and minds.

In the meantime, I leave you with Avery's rendition of "These boots are made for walkin'" (or is it, Steak on the Roses??)inside joke

FYI, if any of you have been wondering, Avery is in the care of an amazing surgeon, cardiologist and medical professionals in the cardiac unit at Children's Hospital in Boston.

I am planning to see her this coming weekend, and will give a first-hand update at that time!!!
-Aunt Kerri signing off for now.