<div>Hello everyone my name is Caitlin and I am Killian's mom. Killian has had a long journey with hypoplastic left heart syndrome (HLHS). He has multiple congenital heart defects including dextrocardia of the heart. Killian has had 3 open heart surgeries so far in his 7 years of life. His last surgery was June of 2023 when he had his Fontan fenestration done. Four months after this surgery he developed plastic bronchitis, which is rare.
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<div>Plastic Bronchitis in Killian's case is from lymphatic fluid leaking into his lungs. Somewhere in his lymphatic system there is a hole that allows the fluid to get into his lungs and slowly fill until it hardens. Once it hardens it makes a "cast/mold" of his bronchial trees. These casts make it hard for him to breathe and cause him to cough, until he can cough the “cast” out, which can be very dangerous.
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<div>He has been dealing with this for almost 2 years now. It began with just needing oxygen at night, to needing travel oxygen to go anywhere. He does nebulizer treatments twice a day and he has a therapy vest that shakes his chest to help jiggle the "cast" loose to cough them out.
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<div>Children's Hospital of Philadelphia has the best specialists for lymphatic disorders. We finally got the call we have been waiting for. On August 15th we will be traveling to Philadelphia for his pre op appointment and on Monday August 18th he will have multiple procedures done to hopefully stop the plastic bronchitis for good.
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<div>We still don't know if Killian’s insurance will cover all or just a portion of his surgery. We just found out the Ronald McDonald houses are at full capacity and they have over 100 families on a wait list a head of us. So we are trying to figure out how to cover the essentials like gas, food and a hotel stay, while meeting our monthly payments at home. Kyle won’t have paid family leave, with his new job, until October.
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<div>We are asking for all the help we can get so we can focus on Killian while he is in the hospital and not stress over finances.
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<div>Thank you to everyone who shares, donates and prays for Killian. We appreciate it all. I will update on here when we get to Philadelphia.
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<div>Caitlin
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