12/29: Aetna Update

Ok. So, Aetna had a major national call-in number failure yesterday, they claim, so that is why we haven't been able to get through on the phone. To tell you the truth, the story doesn't actually make sense b/c we could call just fine - no one would pick up, but what do I know.

I actually talked to a human being at Aetna this evening and it was a good thing I did b/c they rep that notated the non-par request said we were in WI as of yesterday! After some explanation, the guy I was talking to made some critical changes to the request and told me that our doc could call in with more information this evening so the request could go out as an "Urgent Non-par Request." So, if we can get a hold of the doc that is helping us, she's gone home for the day, this saga will be on hold till we get the decision from Aetna.

So, that is the good news for the day. B/c Hopkins is so serious about Emily's airway being difficult we feel that it is necessary to get her somewhere that sees SMA kids airways all of the time before she is extubated. It is extremely common for hospitals to advise EVERY SMA family to consider a trach b/c of a difficult airway - all SMA kids have difficult airways from what I understand. If we are to make a proper decision for OR against a trach, we will have to have eyes-on from an SMA expert in airways -- the University of Wisconsin Children's Hospital.

I want to mention something too -- one of the positive side-effects of being in the hospital with Emily is that Diana and I do get to spend a lot of time together. Granted, I am making no money while we are here, we tend to get stinky, and we're always tired, but PICU stays allow us to spend time together that we do not get in the midst of the craziness at home. That part is nice -- sorta like time stands still -- then lala land ends and we're back into another discussion with docs, nurses, and RT's about optimizing Emily's care :)

Peace <><


Sky said…
Nate Im so glad you got through and talked to someone, I pray for God Speed in getting her out of Hopkins and to a hosp that knows SMA and our kids!!!! And i so know what you mean about time with Diana, time in a way just stops. Wish you all the luck in the world and offering you all many prayers. hugs Sheila
Anonymous said…
Oh I'm sooooo happy to hear that you got somewhere with them!!! YAY!!! I'll be praying for a trip to WI soon and maybe we will see you afterall if you are still there on Jan 7th . . . however, I'm still hopeful that you guys are on your way home then but I do know how that goes in the hospital. Thanks for keeping us updated so we know what to pray for!
The Turnbulls (www.caringbridge.org/visit/stellaturnbullturnbull)
Anonymous said…
Nate and Diana, You are in our thoughts and prayers! We hope Emily gets better real soon! We know it is difficult, but you two are amazing parents and will make the best decisions for your little girl. Give Emily a hug from us! Paul & Mary Boguhn
Nate said…
Thanks, you three families, for the constant encouragement!! Take care of those kiddos!! :)
Joanna said…
wow, that is wonderful!