Our miracle girl....the true story behind it all.
Hello all! Thanks for taking the time to view our Kaitlyn's COTA website. As you can see from our pictures, and videos, Kaitlyn is a much loved little girl who has endured a great deal her first year of life.
Kaitlyn was born at 33 weeks, at Morristown Memorial Hospital, and after a month of the NICU there, she came home on Daddy's 30th birthday! Discharged with a diagnosis of "Nephrotic Syndrome," Kaitlyn was closely followed by Morristown's finest pediatric nephrologist, Dr. Howard Corey. She received monthly visits and bloodwork, and every other month renal ultrasounds. Her growth was steady, and her development was on track, despite her early start. Her first 8 months revolved around many stroller rides, wonderful holidays celebrated with family and friends, new toys, her first vacation to NC, and all other blessings that remain dear to us.
However, around the beginning of October, our Kaitlyn began to get ill. She began vomiting after meals, every so often, and by the end of the month, she wasn't keeping anything down. She would vomit after meals, after bottles, and pretty much when anything was put into her mouth. On the ill-fated day of October 24, 2006, Kaitlyn began her true renal failure.
She had become dehydrated from the vomiting, and electrolyte imbalance and was beginning to become listless and grayish in color by that afternoon. A call to 911, an ambulance ride to Morristown Memorial and phone calls to all close family members was had immediately. By the time the ambulance had arrived at the hospital, Kaitlyn had gone into cardiac arrest from the electrolyte imbalance in her little body, and was quickly whisked into the ER resusitation room for the next 30 minutes....this time is all a blur to us.
However, after the longest 30 minutes of our life, Kaitlyn's little heart started beating again! She was stabilized and brought upstairs to the PICU (Pediatric Intensive Care Unit). We later found out that Dr. Joseph D'Alessio was the angel of our daughter, an intensivist in the PICU who was called down for his help and expertise after time was wearing thin in the ER. He brought back our Kaitlyn, and we are forever grateful to him for that. In fact, as fate should have it, he was not even a permanent doctor at Morristown. His position is one that is only needed every so often for about 2 weeks or so at a time. He comes to Morristown every few months or so...How's that for a miracle!!!
For about a week, Kaitlyn was chemically sedated and paralyzed to allow her body to heal. Following her trip to the ER, her night revolved around assessing her kidney condition, and the outcome of her cardiac arrest. The next morning, a peritoneal dialysis catheter was placed into Kaitlyn's belly. This allowed her small body to receive daily dialysis to flush out the toxins that her kidneys could now no longer process because she was making no urine. Over the course of the next few days, we met with residents and doctors of all medicines. Predictions were made of her awakening and, if she even would. It was said that she may be brain damaged, from the lack of oxygen during the 30 minutes of cardiac arrest. Her head was scanned, her body was examined, and all we could do was wait, watch, and pray.
Miraculously, they took her out of sedation, and she did fine! Her wits were about her, she was responsive, and there appeared to be no sign of any sort of brain damage. The fact that we had back our beautiful girl was all that mattered, dialysis or not.
After a long month of our stay in the hospital, we were sent home on peritoneal dialysis November 20, 2006. The machine and supplies were delivered to our house, and her room and our basement were reorganized to accomodate the vast amount of things delivered. Our lives finally resumed- we didn't let a little thing like renal failure stop us! We celebrated Thanksgiving with our family, and truly had much to be thankful for!!! Other holidays came and went, in fact Christmas was a plethora of gifts for our little girl!!!! We only had a few cases of peritonitis, an infection in the peritoneal cavity ehich is basically the entire inside belly. Once we were hospitalized from it, but the other two times were just resolved in time with medication. Those were the tough days, she would be hooked up to the machine all day, so her body could get the medicine it needed to fight the infection. Many of our days were put on hold, so we could sit with Kaitlyn in our living room, her hooked up to the machine, and us entertaining her for hours at a time.
In January, we met with the transplant team at St. Barnabus Medical Center, in Livingston, NJ. We decided that this hospital was the best fit for our family, and Kaitlyn's renal transplant would be there, as soon as she made the required weight of 10kg. Both Jon and I began testing to find out who would be the best living donor match for Kaitlyn. That's right, living donor!!! How science has come along!!! It was determined that I was Kaitlyn's best match, and she would receive my left kidney on July 25, 2007. After such a horrendous fall of 2006, a transplant would be nothing!! We were so excited.
So, the day came....time for the transplant!! I was so scared. We stayed the night before, and at 9:00 am the next morning, the surgery was performed. I remember sitting in the "holding tank" before going in to the ER...saying goodbye to Kaitlyn, and then going myself into the ER. I have never had surgery before this time, so it was a little exciting, and a little nerve wracking. Don't even bother asking me about the rest of the day after surgery. I spent that time coming out of anesthesia, and adjusting to pain pills. I awoke the next day, the 26th in pain but happy...it was my 28th birthday. I can always say, that for my 28th birthday I gave the greatest gift any parent could give to their child. The gift of life. We spent about 3 weeks in the hospital, Kaitlyn developed a urinary tract infection days after and a bowel obstruction that required more surgery about a week after transplant. This is common, although unexpected. However, we came home on August 20, 2007 and have been great ever since. Kaitlyn is now truly thriving as a child should. She has begun walking, running, and eating like a champion! She never lost her smile, or that sparkle in her eye throughout the entire 8 month journey to and through transplant. She is our life, our heart and soul...and now, my kidney!!! God bless all that have helped us, we thank you endlessly for what you have done. Our Kaitlyn is alive and well, because of your love, support and effort to never give up on her. Thank you for the prayers, and time you have spent with us. You can see how magical Kaitlyn is the moment you see her, and spend just a few minutes with her. Thank you, thank you, for giving us our beautiful girl back, and allowing me to give the gift of life to her....twice!
- Kelly's blog
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