Oh my goodness!! Once again prayers have been answered. We are literally down to just enough of the new formula Ellie desperately needs to get us through tonight. I had made the decision to cut her intake in half and give pedialytle for the rest of her fluid in take just so she could have formula nutrition for school tomorrow and was praying the formula we have paid out of pocket would arrive tomorrow while she was in school.
Instead we just got a call that we do not have to do this. She FINALLY after a month of fighting with the insurance, and calling back and forth with the new DME, her case manager, the peds office, her GI office, TriCare referral management (yes all these groups) that all the scripts, auths, everything is FINALLY in place and a delivery can be set up. I knew if I was patient things would get worked out. Staying patient through this frustrating DME change has been hard, but I stayed patient.
We are getting her stuff tonight. Tomorrow I am meeting with a home health nurse to go over the new feeding pump and learn how to use this pump while she is at school. Right now I am SO grateful for Lilly her feeding tube doll we made for her when she was less than a year old. I will be using this doll to learn how to use her pump and backpack.
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