Recovery

On Feb 17th, 2011, Lisa, John and Kelsey began their new journey Texas.  It's true what they say "Everything's bigger in Texas!"  Houston's Medical Center is miles wide.  Texas Children's Hospital has 5 buildings and each is over 20 stories high.  People travel from across the country and the world to come to this work renowned facility.  Unfortunately, to Lisa, John and Kelsey, Texas is only as big as Kelsey's hospital room.

Empathetic would be the word to describe the emotion that filled the face of every doctor and nurse that has looked at and cared for Kelsey.  It didn't take much time at all for the doctors, nurses and hospital staff to fall in love with her and those big beautiful blue eyes!  Never had they seen a "little one" of her age endure such trauma.  Nor had they seen anyone suffer through 7 open heart surgeries in just 9 months. Kelsey remained in the ICU for 2 months.  The Dr.'s managed to wean some of her narcotics and got her off both CPAP and oxygen.  She made great strides, so they moved her to the floor in mid-April where she continued to work with physical therapy, occupational therapy and speech to regain her strength and recover some of her missed developmental milestones. During this time, Dr.'s continued to experiment to find Kelsey an appropriate diuretic regime.

On June 17th, Kelsey turned 2 years old!  Unfortunately, Kelsey wasn't feeling well at all.  John and Lisa were completely saddened.  They couldn't believe Kelsey had to spend yet another birthday in the hospital and now she was sick.  Despite the situation, the nurses and friends on the floor were determined to give her a party and make the best of it.  The southern hospitality was obvious.  Kelsey's room was filled with smiles, presents and balloons!  The best part was her surprise visitor!! Kelsey's Aunt Judy came from back home to join in the fun.  She'll never know how happy that made John and Lisa to have her there with them.  No matter how bad things seemed or how sick was, Judy always brought perspective and made everything okay again.  The party was a huge success and the staff was wonderful!  Melissa, Kelsey's occupational therapist had brought one cake for Kelsey to play with and one for all to eat.  Cake was everywhere!  It was so nice to see so many people who cared about Kelsey come together and make a birthday in the hospital as good as if it had been done at home.  Although Kelsey wasn't quite herself, the nurses did their best to make sure everyone had a great time.

Over the next month or so, the medical team working with Kelsey was extremely meticulous and took a very cautious approach.  They slowly tapered and chiseled away at Kelsey's diuretic medications.  Patiently they watched and waited to see what kind of response she would have to the diuretic wean.  One thing they knew for sure was that no matter what effect it had on her, whether it be good or bad, Kelsey would show them.  A few days later, the outcome was not what they had hoped.  Kelsey started vomiting almost 100 times a day for 2 days.  This meant she was in heart failure once again and needed to go back up on her diuretics.  Why did she still require so much diuretics this far out from her last surgery which was 6 months ago?

For weeks, it was one step forward and two steps back.  Kelsey is "unique" and so complex.  She never seems to fit the textbook case for any of her cardiac issues.  She's had 3 cardiac cath's since she's been in Texas and they've all reported somewhat positive results.  The stiffness in her heart which was a major concern has lessened considerably.  However, the echocardiograms show that Kelsey's mitral valve is too stenotic (narrow).  We know by scans and by watching her that whatever little exercise she engages in increases the pressures in her heart.  This limits her ability to be physically active and she tires very easily.  There is no doubt that Kelsey will need further surgery.  The question is when.  The dilemma lies between time versus necessity.  The Dr.'s say Kelsey needs as much time out from the previous surgery in January as possible, to allow for a less complicated recovery.  However, how long can Kelsey's small amount of reserve last for? Will it be 3 months, 6 months or a year?

Despite her weaknesses, Kelsey tries hard to play.  She loves Emily, Melissa and all her other therapist friends. They have seen her from the first day she arrived. Back then, she couldn't even hold her head up. Physical therapy was so difficult for her to get through despite her strong will and determination. She'd either go through the whole session vomiting or falling asleep from lack of energy. Today, she can stand assisted and takes steps towards her daddy and mommy who stand in front of her with open arms and big smiles.  She loves her Baby Einstein videos, music and of course...dogs.  Her favorite day is Pet Therapy Day!


After 16 months in the hospital, John and Lisa try to remain strong.  They are exhausted, homesick and they miss their family and friends.   They remain by Kelsey's bedside day and night supporting one another in anticipation for what lies ahead.  They are continued need of our prayers and also our financial support as they look into the future towards Kelsey's next surgery.
 

  

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...

A Difficult Start to the New Year - Praying for a Miraculous 2011

It’s been 7 weeks since Kelsey's last open heart surgery, a mitral tissue valve replacement. Since then, our Christmas prayers and New Years wishes have been replaced with again some very tragic news.

Kelsey's recovery from this surgery has been more complicated and daily we have watched and looked into Kelsey's eyes and seen her slip further away. Constant questions and meetings with her Doctors have been met with very little or no explanations. Kelsey to this point has remained in the cardiac intensive care unit at Boston Children’s Hospital. A baby so full of hope and in many times full of happiness before these turn of events:

She has been fed through continuous intravenous feedings (parenteral nutrition) and withdrawing from sedative medications, while fighting a septic blood infection from her broviac line, her face now disfigured by swelling, her sweet baby sounds and beautiful smile have been gone for weeks, replaced by constant grunting, vomiting and looks of constant confusion and despair. Those who haven’t seen her in recent weeks all have the same response, "What happened to Kelsey?"

Kelsey’s ammonia level which is a product of protein metabolism was 255, normal is 30 - 55. Kelsey was slipping into a coma in front of the ICU Doctor’s eyes. Medication for treatment was started immediately, but this news brought on more diagnostic tests. On Tuesday of this week a brain CAT scan showed a subdural hematoma, bleeding into her intracranial space... new or old or both, difficult for the neurosurgeons to say. On that same day, John and Lisa were pressured to do a cardiac cath, the risks explained, the consent signed, they waited. The results of the cardiac cath brought about tragic news - Kelsey has a paravalvular leak, not a leak from the valve, but a leak from the sutures connecting the valve to her heart. The answers to the questions that John and Lisa had been seeking for the last three weeks had been answered in one day. However, not all the questions are answered, we are now waiting for the same Miracle Worker that has saved her life many times before, to tell us what the next steps are in trying to save Kelsey’s life... 

Please continue to pray for Kelsey, we know she is ultimately in God’s hands, but for now, she is in the hands of the Boston Children’s Hospital fighting for her life…