
Kaylie’s road to recovery
Donation protected
Kaylie has been through a lot in her little life. When she was a baby, she was always sick with tonsillitis (tonsil out by the time she was 18 months), ear infections (tubes twice before 2), hand foot mouth, sleep apnea and asthma by the time she was 5 she started to outgrow it until about 3 years ago in which she has had many hospitalizations due to abdominal pains and few other things. First one was her appendix which was finally caught after the third er visit. That same year her grandpa and her dad passed away and less than a year after that her grandma all of whom she was very close to. Two years ago, she quit walking along with abdominal pains for 3 months and we couldn’t figure out why after two hospitals in San Antonio not knowing what to do with her, we decided it was time to go to Houston. By the grace of God, we knew someone who knew a doctor who came into the hospital room and after reading Kaylie’s history said I believe she has dysautonomia and he asked if I ever heard of pots (her sister has it.) He wanted to see her in office and do a tilt table test which confirmed she had neurocardiogenic syncope at the time some of her other levels were high and after endoscopy found she had gastric intestinal metaplasia. With both of these we treated with medication the neurocardiogenic syncope would be a long-term medication. She started to get better was walking and started theatre, went back to school and was living her best life. She was so full of joy and even got accepted to be apart of the New Braunfels Performing arts competition team that would travel to California. In January she came down with the flu and strep throat and sent her into a whirl wind of events. She started having stabbing pains and would have to be hospitalized to get a ng tube to clear her out as they said it was constipation. After being cleared she continued to have stomach pains, but they couldn’t find anything else and sent her home. After coming home, she started to get really weak and not able to eat much due to the stomach pains and sounds were intensifying. She started to go into orthostatic mode and blood pressure was plunging when standing and she was just miserable. She seemed to be getting constipated again and her doctor believed she needed to come in and get a pic like in to get nutrients. After getting line she still was not getting better and at this point was so lightheaded when standing she couldn’t go but a few feet without having to sit. We were able to get her into the dysautonomia doctor that next Monday but because the hospital couldn’t get home health that soon they would have to pull the pic line and hope she could keep nutrients going. Her specialist put her on more medication and wanted her to start aqua therapy. She continues to not eat and drink very much due to her stomach being in pain. She lost feeling in her legs a few times now and her legs shake uncontrollable she also has soiled herself a few times not even realizing she had gone. They did an endoscopy again and she does have alot of inflammation in her stomach and small intestine, there were a few areas to do biopsies, but everything came out benign except for slightly elevated mast cell in small intestine. After the endoscopy she has complained over her body hurting. She is a mystery which is why we have decided to go to the Mayo Clinic to get more answers. We have been told they don’t take our insurance because it’s not a major one (Christian health plan) I am working with our insurance but because of having the NCS and previous abdominal issue preexisting factors play in and most likely will not cover the major test. We know that everything is in Gods timing, and we trust him through all of this but with several hospital stays, physical therapy, travel, lodging everything is adding up. We just want our Kaybug back to being her fun energetic self. She doesn’t want to go in public because of the fear of seeing someone she knows and them seeing her in a wheelchair and headphones and she hurts all day long.
We want everyone to know that after all the money is raised and we pay off all the doctor bills whatever money is left we would like to pay it forward to other families. We have had so many people come together for Kaylie and we hope that we can do the same for another family.
Fundraising team: Team fundraiser (3)
Heather Hubble
Organizer
New Braunfels, TX
Deb Farrar
Team member
Victoria Farrar
Team member