Amazing Avery Grace’s New Heart

UPDATE:
Avery Grace has now been inpatient and listed 1A status for 79 days. She has been attached to the Berlin Heart for 72 of those days. Avery has had some bumps in the road with her Berlin Heart equipment. She is on her 4th Ikus (the rolling box that houses the computer that powers the Berlin Heart) and three pump changes of the pump that is attached to her chest is cannulas. Avery has experienced some red blood cell breakdown as a result of her latest pump and her team is on the lookout for potential blood clots that can cause neurological injury.  Avery has required some blood transfusions, which will likely raise the very antibodies that will cause sensitization and potential rejection that will need to be treated once she gets her new heart.

Avery Grace’s parents still have not left her side. They have not slept in a bed or in their home for 79 days and counting. Avery is never left without at least one parent by her side-taking care of her and trying to create some normalcy while advocating hard for their girl. They are trying to keep their spirits, hope and patience up as the months drag on without an end in sight. Avery has not been outside in fresh air since February 5th and it will likely be months before she has that opportunity. Avery is the last one in her weight range in the hospital waiting for a new heart and the family is hopeful that one is on the way.  

Expenses continue to pile up as the family juggles paying for their regular household bills as well as trying to fund meals, parking and hospital costs each day. Avery is scheduled to start a special inclusion pre school for delayed and medically fragile children in the fall that also comes along with costs. The family asks that you remember them in your prayers and help with whatever you can as they continue to navigate the unknown of waiting for a heart transplant.  As always, they thank you from the bottom of their hearts and are grateful. 

END UPDATE.


Avery Grace is in decompensated heart failure, patiently awaiting a heart transplant at status 1A at Lurie Children’s Hospital in Chicago, IL. Avery is attached to a ventricular assistive device (the Berlin Heart) that is doing the work of her heart for her. She has very limited freedom and her movements are restrained. She is receiving physical therapy to help her retain the muscle memory and strength to walk.

Avery Grace needs your help to help support her medical costs and family while they maintain two households (home and the hospital) and her dad takes unpaid time off while they wait for her new heart. Avery Grace’s mother put her career aside to devote herself to Avery’s care leaving her father Brett, a teacher with the Chicago Public School district, as the sole provider for their little family of 3. Brett will receive unpaid time off once Avery’s new heart arrives, in addition to not receiving a paycheck all summer when school is out of session. Avery’s heart failure team estimates that Brett will need to be out of work for approximately 2 months post transplant- this is in addition to the days that accumulate to almost a month that he has had to to take off since Avery’s admission. The Nishi’s have been inpatient since February 5th with no end in sight. 

There are increasing medical bills along with the cost of maintaining two separate households. Avery Grace and her family could use your help. No one thinks that their child won’t be healthy, or that self sufficient and personally accountable adults will need to ask for assistance to support their family during a major health crisis in difficult times. What the Nishibayashi's have learned over and over again is that, but for “God’s grace go I.” The Nishibayashi’s simply want the ability to be with and take care of their daughters increasing medical bills and to stay afloat. In order to “just keep swimming” you need to ensure that you can stay above water.

Avery Grace was born with hypoplastic left heart syndrome. In short, she was born with a single ventricle. Avery Grace has half of a heart. Her path was not an easy one to start, and has become increasingly difficult along the way.

There are three staged surgeries that address Avery’s condition. Each of the surgeries is palliative in nature.

There is no fix.
There is no cure.
There is just buying time.

A heart transplant has always been the end game, but for Avery Grace this next juncture took place way earlier than anyone could have anticipated.

Due to complications of her condition, Avery is not eligible for the third of the three planned open heart surgeries. Instead, Avery went through an additional unplanned open heart surgery in February of 2017 at just 7 months old. That surgery failed, and was her third open heart surgery in very short and tumultuous life. The failure of her third open heart surgery left her in heart failure. Avery Grace remained in the hospital for 8 weeks during that stay and proceeded to have a wound infection and wound vac along with a PICC line infection.

Fast forward almost two years and the Nishi’s find themselves in their most difficult fight to date, the fight to save Avery Grace’s life in a very real and tangible day to day way. Avery has been inpatient since February 5th, 2019. During just one week of her hospital stay she had:

-a visit to IR to place a central line under anesthesia
-a visit to IR to replace the central line under anesthesia
-a failed catheterization procedure under general anesthesia
-open heart surgery to place a ventricular assistive device under general anesthesia
-exchange of the VAD to a new more permanent model under general anesthesia

Avery’s parents play an integral role in her support, recovery and wellbeing. It is imperative that they have the freedom to remain at her side and advocate as she cannot yet be her own voice. A heart transplant isn’t a cure and comes with a difficult recovery and a chance of rejection. Brett needs to be with his family during this time. He can only do that with your help.

Anything that you can give matters and is appreciated. The family sends you gratitude, love and light.
#brAvery