Truett's family is anticipating many expenses:
1) Second Opinion at CHOP and John Hopkins Hospital: Truett's primary insuance has informed the family that both hospitals are in network. It is not in-network for his secondary insuarnce.
2) Transporting Truett: Primary insurance has stated that it will not pay for the medical plane Truett needs ($32,900 round trip) unless it deems it "Medically Necessary." Primary insurance has stated that it will not make this determination until AFTER the flight is made. The family has decided that they will take Truett to see these amazing doctors whether or not insurance will pay for it. This is Truett's one shot. When the best doctors in the country say they will see your critically ill child--you go. You don't second guess it. We are working with a wonderful case manager to try to impress upon insurance how important this flight and trip are for Truett. Due to Truett's oxygen requirement, he cannot fly on a commericial airline nor a chartered plane. He requires a medical plane. Truett's base line oxygen requirement (3 liters) also prevents him from traveling on Amtrak.
3)Lodging: Truett's family will need to reserve a hotel for themselvses, Truett and 2 nurses (as Truett needs around the clock care) during this week, which Truett's family will pay out of pocket for. Medicaid may pay a stipend of $53 a day to help if they deem this trip "medically necessary." The family has looked into the Ronald McDonald House, however they cannot guarantee whether they will have a room for the family and nurses. This is troubling as Truett's medical supply company will need to deliver oxygen and medical supplies to the room prior to or at his arrival. Changing the location if RMH is not available could be difficult.
4) Vehicle: Truett's family will need to rent a large vehicle to transport Truett's equipment, him, his parents and the nurses around. (To and from the airport, to and from the hospital as he will be treated as out-patient, and to and from John Hopkins Hospital to CHOP for another opinion).
Truett was born a healthy, full term baby. At 2 months of age, he and his family caught a cold that resulted in him being hospitalized. A month into his hospital stay he contracted a blood infection from his pic line and shortly thereafter stopped moving his legs, diaphragm (for breathing) and arms. He now has a trach and ventilator to breathe (life support), a g-tube to feed, and barely moves his limbs. Doctors at 4 hospitals have tested him for every commerically known genetic disease. Baylor University performed a full gene exome test of all of his DNA and could not find a reason in his genetics for this illness. They are unsure of why Truett is like this. He appears to have a neuromuscular disease that has caused his axon nerves to stop working. It could be genetic, or acquired from the entero/rhino virus he had or the sepsis he got from the hospital stay.
The good news is Truett is starting to move his fingers and arms, and he is starting to initate breaths on his own (1 every 20 seconds). His parents are doing everything they can to help him recover and to find a diagnosis. It is their goal to help him recover, and to one day start an organization or hospital to help other undiagnosed children and families.
Please help us diagnose and heal Truett. You can follow our story on Truett's community facebook page, "Truett's Voice."
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