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

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 a...
17 comments
Read more

Flippidy Floo Flah Folic

Last time I was at Shriners, one of the doctors asked if I had checked my folic acid levels after having Davey.  I responded that I'd never heard of anything like that and had not checked them.  The doctor then proceeded to say she had spoken with a geneticist about our family...two kids with spina bifida.  The geneticist said that I most likely don't metabolize folic acid properly, so that's why my last two children have spina bifida.  In summary, they thought that if I had checked my folic acid levels after Davey, I would have seen that something was wrong and could have prevented Maggie from having spina bifida.  As I listened to these burning words, I thought, "Do you know what you're saying?"  I turned away, bounced with Maggie, and wiped my tears. I'm often asked about folic acid.  It's an integral part of spina bifida prevention , and I should lecture about how everyone should take their folic pills.   But I'm not in t...
20 comments
Read more