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Jonna’s Story, K. Hovnanian Children’s Hospital, Pediatric Palliative Care



I used to like play soccer and run around and cook and do every like do everything in anything possible Jonna was a very healthy amazingly energetic young lady your typical 5th grader at the time suddenly violently ill couldn't keep any food down no longer put even a sip of water into her mouth I lost 20 pounds in 5 weeks and then I had to go to the ER they told me that I'd have to have a feeding tube the name of my condition is gastroparesis but it's also called delayed gastric emptying it's when one or more of your stomach muscles don't work and it basically causes all the foods to stay in your stomach so you know an event processes the right way in your stomach she's on formula feeds through her g2 we do anywhere from two to three feeds which equal to about 16 to 20 hours a day on feeding a lot of these kids feel very isolated and lonely and they feel different than their other kids and other family members so that weighs really heavily on a child but it also weighs very heavily on the family who has to deal with that and seeing their family who never go through that it's very painful for the family as well our world was completely turned upside down point-of-care is about making creating a better quality of life for the child helping to relieve some of the stress of that chronic and severe illness helping that family cool so that really is could be a lifelong journey for this patient we as the palliative care team will be the constant in their lives when they come into the hospital our team of doctors have been amazing in helping us through that journey children are not many adults and people used to perceive that for a long time that oh we can treat them just like we treat the adults and it's completely different one of the programs were most proud of is our Child Life Specialist program we have a team of phenomenal people who are experts in understanding the specific developmental stages of children we use a lot of play therapy with them where you can kind of mimic maybe on a doll what would be happening to you when I first did get diagnosed and when I first was in the hospital I didn't understand it as most now and they really helped me to understand what it is we have met the music man our chronic hints come in and that's one of the first things they ask for he really just helps to make the day bright early on like he usually comes on Wednesdays and Fridays so when I'm in I'm like yay today is Wednesday mad cooks gonna be here so at least I have something look forward to in the day like they want to make the best of your life but even though you're not feeling long you're feeling sick to make you happy and to make you not forget about it completely because you can't forget about it if you're not feeling well but to kind of your mind off things the Child Life program is 100% funded by donor support and we continue to grow that program as we see the need I can't imagine our hospital without that program it is embedded in everything that we do Child Life is also a very big part of our new pediatric palliative care program also made possible through very generous donor support we want to be proactive and really anticipate the needs of all of our families and donor support helps us do that so Jonah since she has gotten her mini one button ah g2 she is managing played well at home for the most part we try to manage everything at home as long as she's able to tolerate the pain we can only do that because of the care that the doctors gave us because if there's something wrong we know we can go in and they'll tell me if we need to go into a hospital for dehydration or if we can continue to manage it at home now Here I am and I'm doing good I'm managing everything and it's really not as bad as I thought it would be when I was first in the hospital we're honored to be able to do what we do but we couldn't do it without the help of the donors when the foundation representatives told us that and that we had people donating to us I was amazed and it actually brought a tear to my eye knowing that there are people out there supporting us and in such a way without even thinking about it it's just it's just wonderful it is something that inspires me every single day so the kindness and generosity complete strangers the hospital this is death they have all gone above and beyond to supply our family it gets the ball that doesn't have to be all bad I ain't know how strong I was like I didn't think I never could have thought that I would be this strong

Glenn Chapman

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