Due to the generosity of the KU NICU we have lived and slept by his bedside every night watching over him and making sure that he was safe for the last 6 months. Granted -- it is a small 6 x 8 room filled with medical equipment, wires, buzzing and beeping sounds, an uncomfortable couch, constant interruptions of sleep, flickering lights, with medical staff constantly in and out of the room which is all normal for a NICU stay -- but we are very grateful. This allows us to be there for him -- he needs medical care around the clock as he is unable to swallow; this means he must have continuous suction so he can breathe and not drown in his own secretions. It was thought that his esophagus would grow, could be attached to his stomach, and would be able to be connected eventually to his stomach.
During this time it was discovered that his condition was worse than all of us, doctors, nurses, and the rest of his support team included, knew. There is only one place on Earth that is currently able to save my son's life -- Children's Hospital in Boston, MA for the necessary surgeries to correct the problems with the esophagus. For more information on these types of problems see www.childrenshospital.org/centers-and-services/programs/a-_-e/esophageal-atresia-treatment-program . And of course, our son has the most severe type. The insurance will pick up most of the expenses for our son but we, my husband and myself, will not have a source of income to support ourselves for the four to six months that we will be in Boston. My husband, currently the sole breadwinner for our family, will not be receiving any monetary support during the time in Boston.
After looking at our finances we are still about $10,000.00 dollars short of our goal "“ our financial plan is to only pay the minimums on our bills, cheapest airfare and minimum food for ourselves for the 6 months in Boston. We are in desperate need of the additional funds to ensure that my son maintains his support system during his recovery after surgery so that we can all return to Kansas and with a healthy, happy and hopefully normal baby.
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