Hi, My name is Ellen and I'm fundraising for my friend Beka and her sweet daughter AJ. Upon entering this world AJ received CPR and was intubated within minutes of her life, still, to this day AJ is fighting her ongoing mysterious chronic lung disease, and no doctor seems to know what she has going on. AJ is now 2 years old, this past month she has been to the Emergency Department twice and was admitted for 7 nights. after that stay, they discovered AJ needs supplemental O2 over the day and night. Over the past week, her O2 requirements have increased daily. Not only is she needing O2, but sometimes she has horrendous coughing fits lasting hours. With the extra calories she burns due to her respiratory issues, she is on weekly weight checks. If AJ can't start making steady weight gain, they are going to add a second feeding tube that will go directly into her small intestine, so she can be on continues feeds 24/7. Due to all of these circumstances, and AJ's setback in her health, Beka is hardly able to work because no facility has the knowledge or nurses to care for AJ. Beka has become AJ's full-time nurse. Both GI and pulmonary Drs are writing a letter to the insurance company to get a home nurse for AJ. Until then, Beka will be home with her monitoring her O2 levels, doing chest Physiotherapy 3-4 times a day along with her nebulizer treatments and blending her the highest calorie food blends to feed her via her Gtube 6x daily. Next steps for AJ: -They have just finished a sleep study -They have been referred to an Immunologist -They have been referred to Boston Children’s Hospital to meet with a new team of pulmonologists who specialize in Interstitial Lung Disease and they have a program called Precision Medicine. -CT scan of her lungs. -Continue weekly weight checks -And more to come Any financial help during this time, while Beka cannot work due to AJs emergent and ongoing health crisis, is vital and extremely appreciated. -AJ'S preferred back up food from https://www.functionalformularies.com/product/nourish/ pediatric line, isn't covered by insurance. -As AJ continues to learn to eat by mouth. There's a company that she would benefit greatly from, that is highly recommended with a high success rate called Growing Independent Eaters https://www.gieaters.com/ This is also not covered by insurance.
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