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.