My name is Chelsea Howard and my daughter, Jasmine Grace was born with Chronic Kidney Disease. I am a single mom with 2 jobs and I work 6 days a week…that is when my daughter is not sick and in the hospital. She is 6 years old now but our current situation is a lot easier to understand if I start at the beginning. Jasmine was born August 16th 2010. They took her straight to the NICU at Riley Children’s Hospital in Indianapolis, Indiana, which is a 2 ½ hour drive from our home. After a week of trying to figure out how her kidneys got so damaged they decided to do an exploratory surgery with a camera to see what was going on. What they found was very complicated. Some of her organs were out of place, some were duplicated and basically all that caused an obstruction for her urine to flow from her kidneys, through her ureters and on to her bladder. So instead the urine backed up to her kidneys and caused significant damage. In order to deal with this for a newborn, when she was 10 days old they decided to do a surgery called a vesicostomy. It was a stinted opening hooked to her bladder for her urine to drain freely in order not to cause any more damage to her organs. So finally when she was 14 days old I got to take her home. Unfortunately this was short lived because on the 5th day I had her home I noticed something was pushing its way through the opening and she started crying uncontrollably. So I rushed her to her pediatrician at that time who in turn gave me very bad advice that led to her bladder prolapsing (coming out of the opening completely) and caused a horrific infection. This of course sent us right back down to the hospital in Indianapolis where they had to push her bladder back in and begin a 14 day antibiotic IV treatment. During this stay at the hospital, her bladder prolapsed again so they had to close the original opening and redo the vesicostomy in a new spot on her abdomen. Let me point out that the doctors at Riley Children’s Hospital are among the best but Chronic Kidney Disease is so uncommonly understood in children that Jasmine actually participates in research. Also, for the few children that do suffer from it, Chronic Kidney Disease affects all children differently. So at this point it was realized that her left kidney was barely functioning so in order to try to save it, another opening was made in her abdomen for that kidney to drain freely. In her first couple years was a lot of hospitalization. During this time she also had 2 surgeries to remove a kidney stone in her only good kidney and was treated frequently for various bacterial infections (which she is prone to). Finally came the big reconstruction surgery that was rescheduled 3 times and anxiously anticipated. In this surgery her left kidney was removed, her duplicate organs combined and other organs were reorganized as best they could. The surgery took 12 hours and was successful as the outcome was to set her up with a catheterizable channel that she will use the rest of her life to drain her bladder. She healed and adapted wonderfully (even through a few unexpected adjustments to the new process). She finally got to start Kindergarten this year and was doing well, even doing the catheter herself. But one thing she has battled throughout her life is constipation (kind of a side effect of having kidney disease). The most severe cases always lasted a day and then she was ok until the past couple weeks that she has thrown up constantly and struggled immensely with constipation. We have been in and out of the hospital; her missing school and me missing work. We are still in the hospital now trying to figure out what is causing her constant vomiting and extreme constipation. Although I am Jasmine’s only parent, we have an amazing supportive family & friends that do what they can to help us. Usually that’s enough to get through and get back on track. Unfortunately this time I have missed (and am still missing) so much work that it’s overwhelming for me and my family financially. I wish I could help others instead of asking for help but I am in a position that even though I work as much as possible, I still live paycheck to paycheck as many people do. I’ve never been able to save money for times like this (because it’s been ongoing since she was born) and I don’t own any credit cards. As far as the amount, I only put one because you have to. I don’t have a specific amount in mind because anything helps and I am extremely grateful for any help I receive. And as soon as I possibly can I will pay it forward. I humbly ask for your help to keep us above water during this trying time. Even if you are only able to say a prayer, we are thankful for that too!
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