Hello, Our 4 year old medically complex , and nonverbal autistic daughter, Grace Lee, is once again hospitalized. We are 6 hours away from home in a city, and hospital we have never been in an attempt to get her the care she desperately needs. Currently she is experiencing nearly half a year long feeding intolerance, recent history of c diff infection & UTI's with sepsis, Visceral Hyperalgesia, mitochondrial disease, and problems with her autonomic nervous system. We are presently inpatient again, this time at the Children's Hospital of Cincinnati for a 4th in-patient stay in three months. In addition to a few weeks stay at the Cleveland Clinic, we have had 2 week + long stays at Children's Hospital of Pittsburgh, and a week at Hamot Hospital in Erie. We have not been home for longer than 2 weeks at a time since May. Their plans currently are to get her through the repeated infections, work on a bowel decompression plan, and hopefully get her to tolerate her g-j feedings. Right now she receiving TPN for nutrition via a PICC line. We may also have to stay an additional 2-4 weeks after discharge at the Ronald McDonald House for her to continue her gastrointestinal transitional therapies. We continue to have serious financial needs after experiencing these back, to back hospital stays over the past 4 months. We are incapable of paying our monthly utility bills: mainly our electricity bill, car payment, phone, and car insurance, in addition to anything that we need while we are inpatient such as; parent medications, travel expenses, meals, toiletries, etc. My husband's position at his job is currently on a "temporary unpaid leave" status. When/if we return home my husband will resume working as many hours as he can to make up for lost wages, and we will eventually catch up on our needs. While we wait he is also looking for work here in OH, preferably at the hospital where they will understand the flexibility needed for a sick child. Currently our family cannot guarantee keeping our utilities on, or our car in our possession without assistance. If we lose our residence in PA before we have a permanent residence in OH, Gracie loses her Medicaid insurance coverage. We cannot stay afloat without help. Grace's case manager, and others on her team continue to reach out to every resource possible for help, but sadly being out of state complicates any funding for living expenses back home to maintain our place of residence. Please consider helping us keep our housing, utilities, basic needs, and travel expenses met while we navigate this latest series of hospital stays for our precious daughter. Thank you for everything everyone has done in the past, and for those who may consider helping now, or again. Our hope is that Gracie receives better care than we have received prior while we are here in Cincinnati, and the goal is to rebuild her care team here. This is a huge journey/adjustment for our family, but a necessary one. Again, please consider helping us through this so we can get our daughter the care she deserves once, and for all. *Please note our LFEBridge has been used in the past for the same medical circumstances, so the current amounts are of a culmination over the last two years. The goal amount(s) do change as the time is extended. It is the same account so our bank information always stays the same. The total amount is not something we have received all at once, but over a series of two years. The needs are still very much alive. Thank you for understanding.
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