Skip to main content

Headed Back Home

Insurance denied again.  So ridiculous.  The medical director for the insurance was looking at out-of-date information and wouldn't review the latest trial which show the benefits of the fetal surgery and make it the new standard of care.  There is also a Yale study that shows the cost benefit to insurance companies by doing this fetal surgery.  In the long run, it will save them so much money by doing the fetal repair.  After much arguing, another independent review is happening right now, and we'll hopefully hear by tomorrow.  We have requested that this next review be done by an MFM... Maternal Fetal Medicine specialist, as opposed to a regular OBGYN.  The hospital had to cancel the operating rooms for tomorrow, so the earliest we can get in is next Tuesday, April 24.  The sooner our girl has the surgery, the better.  Every day that her spine is exposed and her nerves are surrounded by amniotic fluid, damage is being done.

Matt just finished booking our flight home for tomorrow afternoon.  My sister and the PR person from Hermann Medical are in touch with the local news stations to get the story covered.  Who knows if anything will come of it.  It's a bit embarrassing, and I don't know how news worthy it is.  But the hospital is urging us to use every leverage possible.

My neighbor sent me pictures of our flower bed.  Glad I have flowers and our girls awaiting our arrival.  Davey is so devastated to leave his cousins and all their legos.  Matt and I are ready to keep fighting.

Comments

  1. I'm so sad things didn't work out for this week. It just seems so logical for your insurance company to cover this. If only they could just see that! You guys are so awesome and I know things will just HAVE to work out if you continue fighting. For what it's worth, we are excited to see you guys again. We have missed you!

    ReplyDelete
  2. Millie, Praying for the insurance company to read the most up to date info and have a change in heart.

    ReplyDelete
  3. So sorry, Millie! Same as Kim mentioned--we've been praying for softened hearts, as well. UGH! This is ridiculous!!

    On other note--I love the new blog look!

    ReplyDelete
  4. I remember reading about this procedure years ago and thought it was such a wonderful opportunity to help these children. The publicity can only help. Thinking and praying for you and your family.

    ReplyDelete
  5. What a major letdown for you! Hopefully it's just a little delay and you'll be able to move forward on April 24th. We will also be praying for you guys.

    ReplyDelete
  6. I am so sorry! I saw your flowers today as I drove down the street and commented to my family how beautiful they would look for you when you were able to come home. Sorry that it has to be on such a frustrating note. We are still praying for you.

    ReplyDelete
  7. We love you guys! Stay strong! Lean on friends and family k! We are here to help in any way we can! Love you guys!

    ReplyDelete
  8. We have always thought you guys were amazing - and if we weren't fully convinced, this surely seals it. We're so sorry to hear the news. And will continue to pray for a breakthough. Seen you online a few times, but haven't wanted to bother you. But know that we're thinking of you guys.

    ReplyDelete
  9. What a roller coaster ride! The Chidester family from Friendswood is praying for you, the insurance company and all the medical staff involved. Our theme scripture is D&C 123:17 and we dedicate it to you!..."let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed."

    ReplyDelete
  10. You are such an inspiration! We pray for you daily! As I have learned over the last few years (with Bishops help!) is that Heavenly Father knows what he is doing even if we don't. So sorry to hear the news but I am SURE you are being watched over. We just love you guys.

    ReplyDelete
  11. Your family must be exhausted. We are so sorry. Is there we can do here at Matt's school?

    ReplyDelete
  12. My mom Cindy, directed me to your blog. So sorry you have to go through all of this crazyness with the stupid insurance dictators! Ugh. Your family is in our prayers!

    ReplyDelete

Post a Comment

Popular posts from this blog

Shunt Happens

On Thursday night, I couldn't get rid of a nagging concern.  Maggie's eyes were sunsetting.  This is where the  eyes turn downward with the white showing above.  It wasn't constant, and she wasn't showing the typical signs associated with brain swelling.  But the Spirit just kept working at me, and I decided to call the neurosurgeon at Primary Childrens.  He wasn't too concerned and told me to come on Friday for spina bifida clinic.  Once there, the doctor thought it was nothing because Maggie's fontanelle (soft spot) was still soft and of course Maggie wasn't sunsetting for him.  But I didn't want to go to Houston next week until I knew for sure she was okay.  So he ordered a head ultrasound.  Sure enough, the ultrasound showed significant swelling in the ventricles of  her brain.  A shunt is needed. Poor Maggie. I hate to see her go through another surgery.  When I'm at the docs office and get bad news,  I try to act brave and wait until the car r

Curve Ball

Maggie is out of surgery. Things did not go as planned. As the doctor put it, "she threw us for several curve balls." We could not do the ETV. Once in her brain, he discovered that it would be too risky to proceed because of her anatomy. From what we remember, her pituitary was too close to an artery. As they were pulling out, a blood vessel burst. They had to get that bleeding under control before sewing up that side of her head and cutting open the opposite side for a shunt. That's when the neurosurgeon called us to tell us the disappointing news that the ETV wouldn't work. He said he'd come back to visit us in 45 minutes once the shunt was placed. We always knew this was a possibility, but were told her anatomy was "perfect" for the ETV. Guess you can't judge a book by its cover, even with an MRI. Shunt surgeries are common, and it is rare to have serious complications. But two agonizing hours later, we were told what happened. Duri

She's Here!

The c-section went beautifully, Maggie was delivered at 10:17. She's 6 lbs 13 oz and has a smattering of Davey's hair, my chin, Millie's voice, Kate's ears, and Josie's temperament. Her lungs seem pretty immature so she's in the Newborn ICU for now. Millie is back in her pre-op room and has not yet been able to really see Maggie. Immediately after delivering her the doctors whisked Maggie into the NICU in the adjoining room. I've been able to see her in there and have shown Millie the pictures. The lesion on her back looks good--it looks like a patch of skin covering what used to be the hole that was there. Her feet don't have any noticeable clubbing and she definitely has more sensation there than Davey did. We are so grateful that she is here.     Posted with Blogsy