Skip to main content

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 ride home to cry.  But one of the docs had the nerve to give me a hug, and so I lost it.  A large reason we did the fetal surgery was to lower her chance of needing a shunt.  Davey has one, and every time he gets sick, we worry it is his shunt malfunctioning.  He's only had one revision which is really good.  But many people with spina bifida struggle with their shunts regularly and have many surgeries throughout their lives.  But the past two days, I have been reminded of the perfect awareness that the Lord has for Maggie.   He knows just what is best for her and will guide us.

Matt is up at Primarys right now with Maggie doing an MRI.  That will determine whether Maggie is a candidate for an alternative procedure that would reduce the swelling but is not a shunt.  Can't remember the name of it right now, and I'm too lazy to find it.  If she is a candidate for the alternative, then we have to wait until Monday for the surgery because there is only one doctor who can do it, and he's on vacation...lovely!  The problem is that Maggie is getting worse.  She has difficulty swallowing and keeping food down.  I can tell she is in pain and her sunsetting is becoming more and more pronounced.  If she is not a candidate, they will put a shunt in immediately.

Update:  The alternative is called ETV.  Basically, they drill a whole in the front part of the third ventricle which allows the fluid to pass through the brain unobstructed.
What's a shunt?  Here's a description brought to you by google search:


This procedure is done in the operating room under general anesthesia. It takes about 1 1/2 hours.
The child's hair behind the ear is shaved off. A surgical cut in the shape of a horseshoe (U-shape) is made behind the ear. Another small surgical cut is made in the child's belly.
A small hole is drilled in the skull. A small thin tube called a catheter is passed into a ventricle of the brain.
Another catheter is placed under the skin behind the ear and moved down the neck and chest, and usually into the abdominal (peritoneal) cavity. Sometimes, it goes to the chest area. The doctor may make a small cut in the neck to help position the catheter.
A valve (fluid pump) is placed underneath the skin behind the ear. The valve is attached to both catheters. When extra pressure builds up around the brain, the valve opens, and excess fluid drains out of it into the belly or chest area. This helps decrease intracranial pressure.
The valves in newer shunts can be programmed to drain more or less fluid from the brain.

So this morning I'm getting ready for another surgery and hospital stay.  The kids are scrubbing their bathroom right now and packing bags just in case I have to dump them at friends or family today.  

This is a pic of Davey after his shunt surgery.  You can see the bump a the top of his head and then the tube. The tube goes behind his ear and into the abdominal cavity.

Maggie's eyes last night.  That's what sunsetting looks like.

Smelling her sweet skin after her first bath.  Look at that chin!

Maggie had lots of beauty specialists helping with her bath.  She loved it!

 Last night was particularly rough with the Mags.  We both fell asleep with her downstairs, 
and this is what I found at 2 a.m.  Matt's holding in her passy, not smothering her.

  

Comments

  1. Oh Mil. Millie, Millie, Millie. I know there is a plan.... but dang it!

    Too bad sunset eyes are not good, they are darling. I will think of them as sunrise eyes. Love ya.

    ReplyDelete
  2. I think that pic of Matt is just awesome. The dedication of a parent. Good luck guys!! Will keep you in our thoughts and prayers.

    ReplyDelete
  3. As always Millie, you and your family is so very loved and in so many prayers. thanks for letting us share in your triumphs and your tragedies. Heavenly Father's tender mercies was preparing you. Love you and your beautiful family.

    ReplyDelete
  4. Love the pic of you and your three girls, all those pretty blue eyes. Praying for you guys and your sweet little Maggie.

    ReplyDelete
  5. Oh Millie- the ups and downs of it all! I love ALL of the pics, expecially of Matt. You are such good parents and it's awesome to me that you are that close to the Holy Ghost to have felt that prompting. I love you guys, hang in there!

    ReplyDelete
  6. Oh man! Sorry you have to go through another surgery. Love the picture of Matt and Maggie--you guys are the best parents ever!!! We love praying for your sweet family.

    ReplyDelete
  7. The only time I cry in front of the doctors is when they feel bad for me. Sometimes I wish they'd just do the stiff-upper-lip thing instead.

    ReplyDelete
  8. Oh Millie, I am so sorry to hear this. You are in my thoughts and prayers!!! You really are wonderful parents. Your kiddoes are so lucky:). Good luck with that sweet baby. Love ya!!!

    ReplyDelete
  9. So sorry. Our prayers are with you guys. It's a good thing you have perspective...but this still stinks! Good luck.

    ReplyDelete
  10. Good luck, and let us know which procedure she gets. Thinking of you :)

    ReplyDelete
  11. I'm glad that Maggie has such great parents! I think that she must be one of the luckiest little girls to have such a caring family. Love the first bath pic with all of the helpers. You are going to be so spoiled with all of that help!
    Prayers coming your way tonight!
    Love, the Hanna's

    ReplyDelete
  12. Oh, Mil, I am so, so sorry! I remember the night you found out about Davey needing a shunt because his eyes were sunsetting, too. We were sitting on the couch in your front room, and I had just brought you diapers. I remember feeling so dumb because there was nothing I could do and diapers seemed so trivial, but that was your request. We cried then for all the unknowns... Oh, how my heart aches for you again. I know you didn't want this... There is nothing I can say that you didn't already express.

    And that picture of Matt and Maggie is PRECIOUS!! What a good dad!

    Again, love you and praying for you!

    --Ang :)

    ReplyDelete
  13. Thinking of, and praying for, you! I'm so glad you still have your sense of humor ("Shunt happens."), that will take you far.

    ReplyDelete
  14. Oh Millie! I am so sorry Maggie has to do this, what a challenge...again. Gosh, it's just not fair sometimes. I don't know how you do it. I know I've probably said this before, but wow you and Matt and so amazing and such strong examples to all of us. You touch everyone's lives for good through your strength, faith, and endurance. Thank you for that, and remember you can always bring your cute kiddos my way if you need someone to watch them! Hang in there honey, and of course your family is in our prayers!

    ReplyDelete
  15. You've had so many posts come your way. But I couldn't help but to express the love we all feel for your family and what your going through at this time. You guys are always in our prayers. Not easy when your going through it. But the lord is very much aware of you all and loves you so much! Thank you for sharing so much of your strength to all of us. You guys are amazing! Your Faith is amazing! We love you! Love The Wilkey's

    ReplyDelete
  16. The picture of mags and Matt just plunges my heart. How we love you all!

    ReplyDelete
  17. Dear Millie, I would like to ask permission to use your daughters picture of sunsetting eyes in an educational resource for nurses. I came across Maggie's picture on the web during a search. I can be reached at elisabeth.white@sickkids.ca Many thanks for your consideration- Elisabeth

    ReplyDelete

Post a Comment

Popular posts from this blog

Building a Utah Valley Parade of Home

Our home is complete (mostly), and we are thrilled!  It makes my heart flutter every time we pull up. This home is the fulfillment of a dream, full of beauty and accommodation.  Davey zooms up and down the ramps with freedom.  We all have our "favorite parts" of the home, and I can't narrow mine down to one.

The Parade of Homes is happening now, and every day I get questions from friends, family and strangers asking about the parade process and where we purchased things.  I'll answer some of them on the blog.  Keep in mind, this is just our experience.  I'm sure it is different for everyone.

Why did we build a parade home?  ·Some of the subcontractors offered a discount price because their products or work would be featured.  It doesn’t necessarily mean it is cheaper to build a parade home, but it is possible to get more for your money.  For example, appliances.  We wouldn’t normally buy Bosch appliances, but with parade discounts the fancier appliances were the …

Surgery and Nursery

Can't sleep.  Spina bifida does that sometimes!  On Tuesday Davey will have surgery at Shriners Hospital.  Some call the surgery a bilateral tibial rotational osteotomy.   I refer to it as fixing the feet forward.  Here's how he walks now.  See how he trips on his feet because they turn inward.  That's a result of being born with clubbed feet.  Hopefully in two months after his casts have been removed, his feet will face forward.   This is Davey's 8th surgery (I think).  It's difficult to know how he processes the thoughts of surgery.   He is most excited to have a slumber party with his dad at the hospital, and for his Papa from Texas to come and sword fight with him.  It's been a long time since Matt and I had one of our kiddos in an operating room...over a year.  I've appreciated the break and pray the doctors will have skill, wisdom, compassion and clarity as they care for my little boy.  
My heart is really heavy concerning Maggie.  Spina bifida does …

Cross-eyed Cuteness

Written by Matt.

We've had lots of appointments this week.

Thursday:  Millie and Maggie went to the Primary Children's in Riverton for an ultrasound on the kidneys and brain for Maggie.  Everything looked good. 
Friday:  Maggie's first follow up since her shunt surgery.  To us, she seems to be doing quite well except for her eyes crossing.  But as soon as the neurosurgeons saw Maggie, they said she needed to get an MRI.  He felt that it was urgent enough to do the scan that same day, but Millie was too sick to stay at the hospital and was lucky to drive home without crashing.  If you’ve never heard Millie crow up,  you’re missing out (it’s a mix between coughing and throwing up).  And we did an ultrasound on Davey's kidneys that day.  
Saturday:  The MRI.  Millie was still too sick to go to the hospital, so just Maggie and I went.  Maggie was charming as usual even on the required empty stomach and made instant friends with all the nurses and technicians.  I stayed wi…