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…  

Update: Surgery Six

Two days ago, on November 16^th , Kelsey was rushed into emergency surgery after having a heart catherization procedure done earlier that afternoon. During the cath it was found that Kelsey’s new mitra lvalve that was placed only 5 weeks ago, wasn’t working properly. The surgeon and other cardiologists were dumbfounded. Never before had they seen anything like this happen, especially, with a newly replaced valve just over a month ago. They had no idea what could have caused the valve’s malfunction. Nevertheless, they decided to balloon the valve to get it to function but were unable to do so. Shortly upon finishing the procedure, the surgeon came in and told John and Lisa that Kelsey was bleeding internally and he didn’t know where the bleeding was coming from. He said she needed to be rushed into emergency surgery and they needed to locate the source of the bleeding and that her new mitral valve needed to be replaced. John and Lisa were in complete shock. They had just seen their baby girl prior to the cath and she was playing around in her crib. This was beyond their biggest fear. Never could they imagine that their little Kelsey would have to undergo yet another open heart surgery.

Shortly after receiving this devastating news, John and Lisa were asked to say goodbye to Kelsey as she was going to be taken down to the operating room. When John and Lisa entered her room there were swarms of doctor’s all around her. Kelsey lay still and pale on her bed. She was intubated and her belly was extremely distended. As nurses were hanging blood transfusions John and Lisa touched her and kissed her goodbye. Thoughts of how she could possibly make it through one more surgery kept passing through their minds. Kelsey’s tiny little body at only 14lbs had been through so much, could never endure what lied ahead.

Kelsey went into surgery at around 4:30pm. About an hour later, the liaison came out and told John and Lisa that the internal bleeding had stopped and that the surgeon was going to proceed with the open heart surgery. What wonderful news that the bleeding had subsided however, the worrisome, long wait began for an all too familiar surgery. Visions of baby Kelsey’s body with her chest opened up again, more chest tubes and the possibility of coming up on bypass, kept entering their minds. The liaison updated them every hour thereafter as to how the surgery was progressing. For 6 hours, John and Lisa waited with anticipation. Would Kelsey be okay? Would her heart be able to beat on its own? Finally at about 11pm Kelsey’s surgeon walked in and told the family the surgery was finished and Kelsey came off bypass without any problems. A huge sigh of relief filled the room. The surgeon said he was able to replace the mechanical mitral valve with a tissue valve without any issues. Three more hours would go by before John and Lisa were allowed to see Kelsey.

At 2am, John and Lisa headed down to Kelsey’s room in the ICU. There she lay hooked up to the ventilator, 12 pumps, chest tubes, and an IV placed into her scalp. Kelsey looked pale and lifeless as her fight for life began once again. John and Lisa sat by her side and held her tiny little hands and whispered words of strength in her ear as doctors and nurses surrounded her bedside. The rest of the ICU seemed quiet but Kelsey’s room was brightly lit and full of anxiety. There was much concern because her heart rate was in the 180’s and considered extremely high. She was carefully monitored all through the night. About 12 hours after her surgery, Kelsey went into atrial fibrillation so they had to reset her internal pacemaker. As the day progressed, Kelsey grew extremely fluid filled and puffy while her heart rate continued to sit in the 180’s.

At this time, Kelsey remains very critical. Her blood pressure keeps fluctuating, her heart rate continues to be elevated and she keeps having these heart atrial fibrillation rhythm issues. The doctors are saying she’s just been through too much in such a short amount of time. That it will take a while for her little body to recover. All the while, John and Lisa have been right by her side, praying and hoping for yet one more miracle.

Surgery Number 5

On Friday, October 8th, Kelsey was removed from the bypass machine that had kept her alive and on Monday, October 11th, Kelsey's chest was finally closed. She did remain, however, on an external pacing device, her heart was in complete block and unable to pace itself. Another week would go by with no improvement. Kelsey’s heart wasn’t responding. As devastating as one could imagine, the decision was made; Kelsey now needed a permanent pacemaker inserted. This meant back to the OR, back on the ventilator, back on the paralytic drugs and yet once again, opening Kelsey’s tiny little chest incision. The operation was successful, but so fearful of infection, Kelsey’s surgeons kept her on three IV antibiotics.

Kelsey has been on so many drugs, she’s not the vibrant, active 16 month old, they once knew. John and Lisa haven’t seen their little girl smile or laugh in over a month. They have not left the hospital in all this time, months of stress, anxiety and disappointments. They have been Kelsey’s advocate from the very beginning. They have stayed strong for her. Even when they feel like they cannot go on any longer. When they want to give up, when they are just too tired and exhaustion takes over their bodies and minds. They just look at this precious little girl who is their prize fighter. Kelsey will not give up, and they are her biggest fans!

Kelsey's 4th Surgery

On Tuesday, October 5th, a smiling blue-eyed Kelsey made her way to the operating room again.  Her surgeon felt confident that her heart had grown enough to fit the smallest mechanical valve that was available.  A tiny valve measuring only sixteen millimeters. After ten hours of surgery and with a new mechanical valve in place, the cardiac surgical team prepared to take Kelsey off the heart lung bypass machine. After ten hours of surgery and after three open heart surgeries in four months, Kelsey's heart failed to start. The surgeon said her heart was “just too tired.” It was decided to keep her on ECMO (which is similar to bypass, in which it mechanically does the job that the heart and lungs do but are unable) for a couple of more days to give her heart a chance to rest. Kelsey was placed in a medically induced coma and everyone held their breath as they watched Kelsey fight for her life. 

Once again, John and Lisa feared for their baby’s life. The day after her replacement valve was inserted, her heart continued to bleed and wasn’t healing. The tiny child lay in the ICU with her chest left open and visible from the surgery. She was on a heart lung machine, and her blood everywhere. The baby had tubes coming out of her everywhere. Some tubes were filled with blood draining from her chest. Others were transfusing her just as quickly as it was coming out. Blood was trickling down her little arms that didn’t get to clap on her first birthday, running down her legs that hadn’t taken their first step yet. It was a horrific sight. She lay with a thin layer of gauze protecting her open chest hooked up to a machine that was doing the job that her tired little heart just couldn’t do anymore. The surgeons came into the ICU to attempt to locate the vessels that were bleeding, right there at her bedside. After hours that seemed like days, the surgeons approached the terrified parents this time with good news, they located the bleeding vessels and sutured them. The bleeding had finally stopped.

Surgery Number 3

John and Lisa were absolutely devastated by this situation.  They were completely exhuasted and felt so helpless and defeated.  June 17th was Kelsey's first birthday.  There were no balloons, no cake or birthday songs.   All of these things were robbed from her as she struggle to survive.  Quite late that night as everyone watched the frail little child breathe, in walked in the best birthday present Kelsey could ever get.  An renowned pediatric cardiac surgeon, who was a specialist in Kelsey's valve condition.  Within minutes, Kelsey's third open heart surgery was being planned for the very next day.

Kelsey’s parents were told that she needed a valve replacement but she was just too small, too frail. The goal of this surgery was to save her tiny valve that measured only 9mm. She needed to grow, her heart needed to grow so a replacement could be done, maybe in two years. The surgery was described as “much more of a risk” due to her tiny nine pound size. She was so fragile, so depleted of nutrition, her body not having the opportunity to replenish itself. Her post-op course would be longer, harder, and more complicated. John and Lisa stood by her side, never leaving the hospital. After 62 days, Kelsey was again discharged home, her valve thought to be repaired. Kelsey went home after her third open heart surgery, more depleted of nutritional resources than ever. Only home for forty eight hours, Kelsey was unable to sleep nights, unable to tolerate any of her feedings and vomiting. Her oxygen level dropped and she turned blue. Completely terrified, Lisa and John dialed 911. Kelsey was rushed back to Children’s Hospital where a catheter was inserted into her heart to try and save the struggling child. The increased pressure caused the valve in her heart to tear. Her valve was damaged beyond repair. Kelsey would now need a fourth surgery. However, this time she would need a complete valve replacement.