Help Kaleigh Fight Severe Gastroparesis
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Kaleigh's Story
In early August Kaleigh was just like every other high school marching band student. She was busy and working hard on her part in the marching band's field show. She was also healthy and happy! Kaleigh was excited to start her junior year, start driving and eager to take on her new role as drum minor. She was also a little anxious about Spanish and the strict teacher she had been warned about in her honors English class. Little did we know life was about to change . On Friday 8/23 she woke up and she didn't feel well. Her side hurt and she felt nauseous but, she went to school anyway. She knew that she could not miss school and be able to participate later that evening in the band performance. In marching band performances are a test grade. Kaleigh takes band more seriously than anything else in life. This was an especially big day for her since it was the first performance of the year and it was also the very first time she was going to be on the podium to conduct for a portion of the game. After toughing out the entire school day she called me. She was in extreme pain and throwing up she was hoping to go to a walk in clinic and make it back before the game started. That was our first ER visit and started this roller coaster and endless string of doctor appointments, testing, er visits, and hospital stays. Since August we have spent as many days at a hospital, er, or doctor's office as we have spent at home.
Kaleigh's history:
Kaleigh has been a fighter all of her life. She was born with several heart defects and at 9 months old she had open heart surgery. She continues to have issues with her heart and that makes her surgery risk higher than normal. That she is higher risk has kept doctors from performing at least 2 surgeries that were later deemed unnecessary. She has been misdiagnosed multiple times by local doctors in Morristown and at Children's in Knoxville. We have been told that she has everything from constipation, to appendicitis, to gallstones. In all the testing and procedures Kaleigh has undergone we know that she has 8 kidney stones and that her stomach and intestines are not working properly. In August and September it seemed that her issues were stemming from the kidney stones she has. So she ended up in the hospital with renal stents. Typically that is a same day procedure but, Kaleigh was in the hospital for three days before she was able to come home. Her urologist feels like the stents did not help her in any way and that no further urological intervention is needed at the moment. The kidney stones she has are considered stable and she follows up with him in about 5 months.
Kaleigh's Current Condition
She has been diagnosed with severe Gastroparesis which basically means that her stomach is paralyzed and doesn't empty normally. She feels hungry but, she can't keep ice chips down let alone solid food. In mid November Kaleigh was hospitalized for a week due to dehydration and weight loss. She was able to come home with a feeding tube and lots of medicines. Since August she has lost around 30 pounds despite everything we have tried to help her. Unfortunately she hasn't tolerated tube feeding well. She isn't absorbing the nutrients from her tube feeding formula and has continued to lose weight although she should be gaining weight. We want to hold off on IV nutrition as long as possible because of the risk of major organ damage that is associated with IV nutrition. Her specialist at Children's in Knoxville do not know why this has happened to her. They also can't do anything else to help her. This week they heavily considered hospitalizing her again but, ultimately they have referred her to specialists in Cincinnati . We know that they do excellent things for Gastroparesis in Cincinnati and we are excited about the medical options available there. We know that we are looking at more time away from work and multiple trips for appointments and likely at least one hospital stay. We are not exactly sure yet when her first appointment will be. It could be anytime in the next few weeks. We think it will likely be in January. We have had several friends and family who have offered to help and that is why we have decided to start a go fund me.
Our Goal
Our goal is to get Kaleigh back to her life! With the treatment options available in Cincinnati we think that is completely possible. We want her to be able to go back to school, participate in band, complete her course work and be able to try out for drum major just like she has planned to do for the last 3 years. We are hopeful that next year our girl will be applying to colleges and for the scholarships she has been diligently working on since she started high school. We appreciate everyone's prayers and help to achieve these goals. Thank you for every single prayer, share of her story and contribution. The goal amount is what we anticipate will be needed to cover expenses including travel, hotel cost, and living expenses during this time. Please know all money donated will go toward helping support Kaleigh and helping her get her life back on track.
Thank you for taking the time to read about Kaleigh's Story!
5
In early August Kaleigh was just like every other high school marching band student. She was busy and working hard on her part in the marching band's field show. She was also healthy and happy! Kaleigh was excited to start her junior year, start driving and eager to take on her new role as drum minor. She was also a little anxious about Spanish and the strict teacher she had been warned about in her honors English class. Little did we know life was about to change . On Friday 8/23 she woke up and she didn't feel well. Her side hurt and she felt nauseous but, she went to school anyway. She knew that she could not miss school and be able to participate later that evening in the band performance. In marching band performances are a test grade. Kaleigh takes band more seriously than anything else in life. This was an especially big day for her since it was the first performance of the year and it was also the very first time she was going to be on the podium to conduct for a portion of the game. After toughing out the entire school day she called me. She was in extreme pain and throwing up she was hoping to go to a walk in clinic and make it back before the game started. That was our first ER visit and started this roller coaster and endless string of doctor appointments, testing, er visits, and hospital stays. Since August we have spent as many days at a hospital, er, or doctor's office as we have spent at home.
Kaleigh's history:
Kaleigh has been a fighter all of her life. She was born with several heart defects and at 9 months old she had open heart surgery. She continues to have issues with her heart and that makes her surgery risk higher than normal. That she is higher risk has kept doctors from performing at least 2 surgeries that were later deemed unnecessary. She has been misdiagnosed multiple times by local doctors in Morristown and at Children's in Knoxville. We have been told that she has everything from constipation, to appendicitis, to gallstones. In all the testing and procedures Kaleigh has undergone we know that she has 8 kidney stones and that her stomach and intestines are not working properly. In August and September it seemed that her issues were stemming from the kidney stones she has. So she ended up in the hospital with renal stents. Typically that is a same day procedure but, Kaleigh was in the hospital for three days before she was able to come home. Her urologist feels like the stents did not help her in any way and that no further urological intervention is needed at the moment. The kidney stones she has are considered stable and she follows up with him in about 5 months.
Kaleigh's Current Condition
She has been diagnosed with severe Gastroparesis which basically means that her stomach is paralyzed and doesn't empty normally. She feels hungry but, she can't keep ice chips down let alone solid food. In mid November Kaleigh was hospitalized for a week due to dehydration and weight loss. She was able to come home with a feeding tube and lots of medicines. Since August she has lost around 30 pounds despite everything we have tried to help her. Unfortunately she hasn't tolerated tube feeding well. She isn't absorbing the nutrients from her tube feeding formula and has continued to lose weight although she should be gaining weight. We want to hold off on IV nutrition as long as possible because of the risk of major organ damage that is associated with IV nutrition. Her specialist at Children's in Knoxville do not know why this has happened to her. They also can't do anything else to help her. This week they heavily considered hospitalizing her again but, ultimately they have referred her to specialists in Cincinnati . We know that they do excellent things for Gastroparesis in Cincinnati and we are excited about the medical options available there. We know that we are looking at more time away from work and multiple trips for appointments and likely at least one hospital stay. We are not exactly sure yet when her first appointment will be. It could be anytime in the next few weeks. We think it will likely be in January. We have had several friends and family who have offered to help and that is why we have decided to start a go fund me.
Our Goal
Our goal is to get Kaleigh back to her life! With the treatment options available in Cincinnati we think that is completely possible. We want her to be able to go back to school, participate in band, complete her course work and be able to try out for drum major just like she has planned to do for the last 3 years. We are hopeful that next year our girl will be applying to colleges and for the scholarships she has been diligently working on since she started high school. We appreciate everyone's prayers and help to achieve these goals. Thank you for every single prayer, share of her story and contribution. The goal amount is what we anticipate will be needed to cover expenses including travel, hotel cost, and living expenses during this time. Please know all money donated will go toward helping support Kaleigh and helping her get her life back on track.
Thank you for taking the time to read about Kaleigh's Story!
5Organizer
Mekesha Rhea
Organizer
Morristown, TN
