Have a Heart for Kelsey!

ATTN: There will be a Fundraiser for Kelsey, we urge you to attend or if you would like to donate items to be auctioned off please contact Joni or Carolyn below. In addition, please take the time to read the latest update on Kelsey and learn about her move to Houston, Texas.

Fundraiser for Kelsey - Have a Heart for Kelsey
Please save the date
Friday, April 15th
7:00 p.m.
Sons of Italy in Winchester, MA
Tickets will be sold at the door - $15/each
Please email to RSVP:
Joni Holmes:  joni.holmes@gmail.com or Carolyn Forester Rogers at crogers@infraredx.com

On January 10th, Kelsey headed back to the operating room for SURGERY #7, to repair a large paravalvular leak and to widen her SVC. An SVC is a large blood vessel that brings blood from the body back to the heart.  Kelsey's SVC was very narrow and the reason for her facial swelling. Another surgery that lasted what seemed like countless, nerve-racking hours did not come without complications. Immediately following surgery, Kelsey acquired a critical, unexplained post-op bleed.  She laid dusky blue in her crib as blood products were being pumped into her body.  However, the blood that was being transfused in was also affecting her lungs by settleing into the pleural space behind her left lung.  This impinged on Kelsey's ability to be extubated off of the ventilator. This was going to be a much longer and more difficult recovery process than any of her previous surgeries.

When extubated, Kelsey was forced to be placed on a CPAP machine to prevent her left lung from collapsing. This was traumatic not only for Kelsey, but also for her mom and dad. For months, this mask was strapped tightly around her small head and covered her tiny face. After a while, her smiles were gone.  Her cries were faded.  She barely interacted with anyone.  Including her own parents.  This mask impeded her from engaging in anything. 

Kelsey began to withdraw as she tried to cope. She grasped onto her parents fingers as again, the familiar words were spoken, "you're okay Kelsey." They felt powerless next to their daughter. Their hands reached in between the railings of her crib as they constantly stroked her hair and reassured her and themselves as well that everything would be okay. My brother and his wife were thinner and paler than ever. Their faces reflected their innermost fear...Was Kelsey really going to be okay? Prior to this surgery, the surgeon said, "I can widen the SVC and I can fix the paravalvuilar leak but I don't know if her heart has become too sick to recover because of all of the previous surgeries."  Which meant that there would be a strong possibility that Kelsey may need a heart transplant.

Five weeks post-op, John and Lisa waited.  There were more meetings, more concerns and more questions left unaswered while Kelsey remained on 4 durietics (fluid medication), being administered around the clock. Two of which were being administered by IV.  She was transitioned from CPAP to high flow oxygen during the day set at 7L, CPAP (constant airway pressure oxygen, now at night only) yet her lungs continue to worsen.  Some of her IV medications also include milrinone (for her heart), sufentanyl (an anesthetic medication used for sedation) and lactulose through her J tube (for her elevated ammonia levels). It was obvious to her parents that her lungs, her kidneys and her liver were overexerted. With fear they asked themselves the most important question.  How long was too long to wait and see how Kelsey would do?  A move had to be made, a decision had to be made as Kelsey's life was hanging in the balance. John and Lisa made the decision to take their baby out of Boston Children's Hospital...

Through continued prayers for wisdom and guidance hours of searching and reading we reached out to Chief of Texas Childrens Hospital and Cardiac Surgeon In-Charge of the nations largest Childrens Hospital. He phoned Lisa and John himself and said "it would be an honor to care for your daughter." On Feb 17th, a cold Boston morning, Kelsey boarded a Med Flight Jet with her mom, destined to Texas Childrens Hospital. For the first time in 11 months, her father left Kelseys side. The Medjet could only accommodate one parent. He left before they did, unable to see them off safely. He wanted to meet them there when they landed. There was a look of disbelief on his face as he boarded the flight to Houston that morning.  It was as though this was some sort of a terrrible dream. His worst nightmare.  Absolutely unimaginable for any parent to go through. Maybe he would wake up and everything would be the way it used to be and baby kelsey would be okay.

John and Lisa, stripped now of winter coats they eagerly seek a NEW set of eyes.  A NEW set of opinions and hopefully some answers. John and Lisa have made the bravest and hardest decision of their lives. They have left everything familiar behind, in attempt to save their daughter's life. They have the support of John's family, Lisa's father Jack, her Uncle Paul, and their friends. The move to Texas is not only brave but costly. We together as their family and friends are looking to take away as much of their financial stress that we possibly can.

We urge you to attend the fundraiser and help John and Lisa as they wait by Kelsey's bedside 1,800 miles away from thier family and friends...