Skip to main content

Postponed

We're back home now with Maggie.  The surgeon who was away this weekend examined her this afternoon.   He said with confidence that she was stable, and we could wait to do surgery until later in the week when the rest of his team would be available.  The plan is for us to go in on Wednesday for one more exam and then surgery first thing Thursday morning.  The only factors that would change this plan would be if Maggie gets significantly worse between now and then (her soft spots get noticeably harder, she can't lift her eyes up, she can't be roused from sleep, she vomits uncontrollably) or she gets significantly better.  She seems more discontent to us but we're hopeful that she can stay stable til surgery on Thursday (she will).

This ETV-CPC (Endoscopic Third Ventriculstomy coupled with Choroid Plexus Cauterization) procedure is amazing.  As explained by our surgeon it was performed initially by a doctor working with children in Africa.  The results of those surgeries indicated that the ETV-CPC procedure was an effective alternative to shunting--particularly for kids with Spina Bifida.  It has been performed at Primary Children's since February and for those who are candidates is considered the new standard of care.  Maggie is certainly a trailblazer.

Davey's casts went well.  He maintained his desire for green and pink striped casts (with some coaching from Matt) and got a lot of compliments throughout the day as we walked the halls of Shriners and Primary Children's hospitals.  We'll go back to Shriners in two weeks when they will saw off the old and put on a new set of casts with his feet in a different position.  The process will be repeated for the next six weeks.  We will also get an ultrasound of Maggie's hips on that day to make sure she doesn't have hip dysplasia.

Glad our spina bifida marathon day is over.  I'm excited to take Kate to her first piano lesson.



Comments

  1. EmilyAugust 27, 2012 at 4:44 PM

    Oh that's great! (Well not totally great, but greater than one I thought.) What I mean is, when I tried to read out loud your description of a shunt to Brian I got a little gaggy, but the ETV one seemed so much nicer in comparison. A perfect procedure for a perfect little girl.

    I hope Kate's piano lesson is all you dreamed it would be. :)

    P.S. I hope you know how much you mean to me by how hard I work to figure out the word identification to leave a comment. I almost gave up when I failed the third time last night but Brian urged me to keep at it....

    ReplyDelete
  2. ChristinaAugust 27, 2012 at 6:11 PM

    I LOVE the cast colors, what an amazing little boy you have. I'm so glad Maggie is doing well enough to wait until Thursday. We pray all will go as planned.

    ReplyDelete
  3. AliAugust 27, 2012 at 7:23 PM

    SWEET casts! Glad that all went well. And glad that Maggie is stable...but HATE that you've had delay after delay with her care! Still good luck and prayers.
    Thank goodness you have some normalcy to look forward to. I love a good piano lesson! Hope Kate loved it!

    ReplyDelete
  4. Brenda GentryAugust 27, 2012 at 7:42 PM

    I totally need to send Dusty a picture of the casts!!! He will love them!!! Davey is so cute. Keeping all of you in our prayers. Good luck with Maggie this week:).

    ReplyDelete
  5. Jenni ElyseAugust 27, 2012 at 9:27 PM

    Davey looks so cute in his casts! I love the colors! As they continue to realign his feet and hips, is it a hope that he'll be able to walk someday? Or, is that not viable for those with spina bifida and club feet? Sorry, I don't know a lot about it. But, as I read your blog, I'm becoming more and more educated.

    And, I'm glad Maggie is stable. Sorry you have to wait again, though. I hope all goes well between now and then!

    And, I just have to say that I'm constantly amazed at how strong you and Matt are through all of this. Your posts are usually so upbeat even though you're going through so much. I know you break down; who wouldn't. But, you two really are an inspiration on how to deal with trials and tribulations with a glad heart.

    ReplyDelete
  6. UnknownAugust 28, 2012 at 8:31 AM

    So glad that this other surgery is a viable option. Maggie is on the cutting edge of it all! Davy's casts remind me of Christmas! Such fun, happy colors! We are praying for you every day.
    Love, the Hanna's

    ReplyDelete
  7. angeeAugust 30, 2012 at 8:48 AM

    Love that Davey!

    ReplyDelete
  8. AnonymousSeptember 3, 2012 at 10:41 AM

    hi!,I like your writing very much! share we communicate more about your post on AOL? I need an expert on this area to solve my problem. May be that's you! Looking forward to see you.

    Staircases

    ReplyDelete

Post a Comment

Popular posts from this blog

At The Moment

Josie was reluctant to go to school today.  Friday was her "worstest day ever" of kindergarten.  According to her account, nobody would play with her at recess.  "I would ask different girls but they said they wanted to play with somebody else."  Then on the bus ride home, a girl kept pulling her pigtails, sang a mean song making fun of her and yanked her backpack.  I asked Josie how she reacted.  Her response, "I just sat in the corner."   When Matt heard the story he said, "Nobody puts Josie in a corner."  Just like Patrick Swayze.  I think it's easier to say goodbye to a daughter being wheeled into an operating room than watch her venture into the great unknown of kindergarten. Speaking of surgery, we are still in limbo for Maggie's surgery... ETV-CVF .  We are scheduled for this Thursday, but I'll meet with the neurosurgeon on Wednesday and reevaluate whether or not we should proceed.  We don't know what to do...
7 comments
Read more

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...
24 comments
Read more

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
27 comments
Read more