The surgery was uneventful and went as well as could be expected. During post-op, however, Grace crashed due to an adverse reaction to the pain medication which resulted in severe breathing difficulties. She had to be intubated a second time, and spent 3 days in PICU.
After three days, she was moved to recovery, where she spent five days. During the stay Grace was diagnosed with Laryngomalacia. A swallow study was done and she was then diagnosed with dysphagia and was aspirating small amounts of formula. She then began refusing to eat and formed and aversion to taking anything orally.
Grace was released from the hospital 100% dependent on a NG feeding tube and under home-care observation. Once a week a nurse comes to the house to check on Grace's progress.
Throughout April, she had follow up appointements with the neurosurgeon, plastic surgeon, speech, ENT, and pediatrician, as well as weekly at home visits from the home care nurse. In the second week of April, Grace was fitted for and started wearing her helmet.
As of today, the cost of Grace's care has been over $200,000.00. This total grows weekly with appointments, and we still don't know exactly what the out of pocket total will be when all is said and done. There may be a need for a second surgery to correct some residual issues not corrected by the helmet. Grace will be on the feeding tube for an undefined amount of time, and the GI Doctor is talking about placing a G tube for feeding directly into her stomach, which would require yet another procedure.
Meanwhile, Grace's Mom was recently laid off from her job. With medical bills piling up, the timing could not have been worse.
We are all incredibly lucky to have little Grace in our family, and there is no shortage of love for her as she struggles through this. I decided to reach out on behalf of Grace and her Parents, Alan and Linda Enzbigilis, through this site in an effort to aleviate some of the financial burden associated with this journey. Any donation is immensly appreciated. The last thing on my borther and sister's mind should be financial concerns.
Long-time Downers Grove residents Al and Linda Enzbigilis have always been the first to volunteer a helping hand to someone in need. They have participated in numerous fundraising efforts including St. Baldrick's for a number of years. They would never ask anybody for anything, which is why I decided to create this page for them. Please help if you can. Thank you!