Tuesday, May 25, 2010

Cranio Facial Clinic

Hi Friends.

I'm trying not to be disappointed about the clinic today. In my head I imagined the plastic surgeon and neurosurgeon carefully detailing each inch of Evie's head and making plans for her surgery, which I thought they would schedule soon because of the fact that she had seizures last week, and her soft spot continues to bulge higher and higher out of her head.

As I was checking in, the neurosurgeon was nearly running out of the clinic with his residents off to an emergency. Don't get me wrong, I am glad they were available to go, if it was Evie having an emergency I would want them hurrying to help her! So we met with the plastic surgeon, who had only had a few brief seconds to even talk to the neurosurgeon about the case.

Here are the highlights of things that we learned today:
1. our hospital stay will probably be 3-5 days. A day in surgery, followed by 24 hours in the PICU bandaged up with a drain coming out of her head, followed by a few days on a normal floor.
2. they aren't going to sew Evie's eyelids shut. I have heard about them doing this during other kid's surgeries, and I was pretty bothered by it... this plastic surgeon uses other methods to keep them closed.
3. they are going to cut Evie's scalp from one ear to the other, remove the bones across her forehead, reassemble them with dissolvable plates and screws, and put it all back in.

I was pretty disappointed when the plastic surgeon told us he would get ahold of us in 6-8 weeks when insurance approved the surgery so we could schedule it. SIX TO EIGHT WEEKS!? We were originally told 2-3 weeks, and last week they said they were going to move it up... so now we don't really know what to expect. Evie has had some odd days here and there, and we are ready to get this done and over with so we can stop worrying about it.

Lastly, could you pray for our insurance issues? This morning I got a call that insurance decided not to pre-approve us for our visit this afternoon... giving me a whole 4 hours to get that straightened out. Not too long after we were un-approved I got a call that we were approved, yet while we were AT the clinic, I got another call that we weren't necessarily approved and I needed to call HR at John's work tomorrow. It breaks my heart that this is the cranio-facial team that Evie needs, and insurance may deny it. She was denied the RSV vaccine in January, and in February she spent 14 days in the PICU, 8 of them ventilated, unable to breathe on her own. Makes me so unbelievably sad, and helpless as a mother.

I don't know how to handle this situation with grace and peace because I really just want to grab ahold of whoever is denying coverage and shake them and cry at them until they realize how sick my baby is, and that it is too hard to sit back and wait, while pressure may be building in her brain. It isn't even possible to get ahold of this "person" who decides that coverage is denied... when I call the insurance company I get a customer service representative who claims they have no idea what I'm talking about. I'm so so so frustrated.

So I'm going to spend part of the morning tomorrow trying to reach someone in HR to help me with insurance problems, and pray that they will cover surgery. Children's is the best place to have it done, so we need to get it covered.

Thanks for loving us and praying for us as we continue on our journey. Insurance is such an unimportant thing that I hate to blog about it, but it has caused us so much heartache and instability in the past few months that it is worth it to me to have people praying.

Love you (:


  1. If your insurance denies this (which would be an atrocity), please let us know where we can send a little money to help. We don't have a ton to share but we can certainly help a little bit.

    My dear son who has mild HPP worries me everyday. I cannot imagine what you are going through.

    Many prayers for your little girl and family.


  2. Don't give up in the fight with insurance! The battle should never stop and hard as it is to make those phone calls, keep making them. Say a prayer first, then make the call, and then say a prayer afterwards to keep your strength there. Prayers are with you all the way during this time from the rest of us. Tami

  3. Ok, catching up again! Way to go Evie on rolling over!!!! Woooo hooo!!! Happy birthday to Lyla!!! I love the matching dresses, they are beautiful! You are very talented Lindsey! Sorry to hear about Evie's fever and the seizures. Insurance companies are ridiculous! It's all money to them... unbelievable! My best advice for this would be to get a case manager through your primary insurance. You should be able to tell this person Evie's story, the rareness of it and all of these medical necessities that she NEEDS! This would be your go to person everytime there is a rift in coverage issues and they will sort it out! So much easier to talk to one person who is following Evie's journey! Do you have Medicaid? We have it as a secondary insurance for Sonya seeing as how OI is a disability. I think Evie would qualify easily! Medicaid would cover anything that your primary doesn't including co-pays (I'm sure they are racking up! Ours certainly did!) I hope this helps! The last thing you need to be doing is fighting with the insurance company over anything needed for Evie! Hugs!

  4. I got this through a facebook update. I thought of you when I saw it. Just wanted to pass it along. May or may not be of interest to you.



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