Post Op Day 32

2pm: Got news the peer to peer call happened with insurance this morning for the Omadacycline appeal. The outcome wasn’t a yes but wasn’t a no. They don’t feel like there is enough pediatric data to approve it at this time but agreed to let our ID doc here send them the little bit of data he has to try and get it passed the line.
 
5pm: We got approval!!! Plan is we will sign consents for the Clofazimine on Monday and will need to wait for it to get mailed here then we can leave the hospital and won’t need to do IV meds at Ronnie’s. Should be out of the hospital by the end of the week.????????
 
I figured I’d bring you along on this roller coast ride too ???? I had this whole thing written and just hadn’t posted it yet when we got the good news so I wanted to leave it all in there!!
Our ID docs and pharmacists decided she could do the Omadacycline med 1x a day instead of 2x. They will keep the 4am dose so it doesn’t impact her eating schedule during the day. For the past few weeks she couldn’t eat 4hrs before or 2 hours after her 4a/4p doses. This was rather challenging if you also add in the current request of our endocrine team to not eat within 3 hours of receiving insulin. She is free to eat whenever and only having to plan around her sugar checks and correction doses again! This is a big win for now and for when we get home and start school.
 
We have a pass from 1-9p tomorrow without having to stop back by for anything!! Avery’s bestie landed today and will be here tonight and all day tomorrow!! We are going to try the children’s museum and dinner with her while we are on pass. Wish us luck!!
Today – the girls visited the secrets studios for a special guest before his big concert tonight at the Red’s stadium – Quinn XCII. We are all new fans!
 
Ronnie’s House Address Update:
We got an upgrade ???? The house had a slightly bigger room open up and offered it to us. We are now in room 3405. Here’s the updated address:
 
Avery Winkelman – RM 3405
341 Erkenbrecher Ave
Cincinnati, OH 45229
 
I’ve had/have all sorts of plans to show everyone the house and our rooms but just haven’t gotten to it! I will try to at some point. I really want everyone to know how amazing this house and charity is. It’s such a gift to be here and worth anyone’s annual charitable contribution dollars if you are looking for a worthy cause.
 
Yesterday, the girls got to zoom with a vet at the Currumbin Wildlife Sanctuary in Queensland, Australia. They gave the girls a walking tour of the zoo portion of their sanctuary. They got to meet the Koalas and Kangaroos!! Special shout out to our friend Christa for helping set this up. There are some additional wildlife tours coming for both the girls in the future; they are so excited. Avery’s next koala meeting is set for this coming Tuesday night!

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