Saturday, June 13, 2009

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"


Robyn said...

"Clear lungs with low pressure" coming up!

Marilyn Rock said...

Make that a "twofer"! We will get the job done Kerri! xxoo

Susan May said...

I wish Avery the best and hope for a new heart soon. My son had a heart transplant at one year old. He is now 20 and attending college. The road has not always been smooth but well worth traveling. Keep up the positive thoughts.

Susan May
Nick's New Heart--available now