Thursday, March 13, 2014

MRI Results and the Big Surgery

Today was the big MRI day for Mason!  He and I went to Children's Hospital before breakfast this morning and he got into their spiffy blue pajamas.

He was not very impressed.  Poor guy lodged a complaint because they do not have orange pajamas.  What can I say?  He loves orange!


He was in a much better mood once he got to start cruising the halls in search of the ocean room.  The ocean room has a treasure chest and wall full of small toys and activities for children to choose from while they wait around for anesthesia.

Today Mason chose a marker and coloring book.  We headed back to his room and just relaxed for a while.  He watched some Curious George on the Kindle Fire and I read a book.  There really isn't a lot to do besides wait. 

Or cruise the halls.  He does that a lot by the end of our wait time. 

Eventually we were taken to the MRI.  The anesthesiologist introduced himself and got a medical history and then it was time for Mason's beauty rest.  He took the anesthesia mask like a champ and drifted off to sleep.  Meanwhile he got nearly 2 hours of pictures taken of his brain and spine. 

While he was doing that I went to the cafeteria to pick up some food and went to the surgery waiting area.  It's a room full of people all worried, waiting for a doctor to come update them on their child.  I read some more and eventually Mason's time was up.  I met up with my sleepy little man in our tiny post-anesthesia room.

He enjoyed a popsicle and then it was back into his own clothes.  The next stop was Neurosurgery at the other end of the hospital.  We wandered our way over, stopping to check out the saltwater fish tank, the indoor plants, and anything else that caught his eye. 

More waiting commenced and this time it was PlayDoh to the rescue.  He squished and rolled and stuck toys in the playdoh.  I filled out papers and read and picked up the lid to the playdoh can six or seven times.

We got settled in a room and talked with Dr. G, our neurosurgeon.  He showed us the pictures from the MRI and confirmed that our next step is detethering Mason's spinal cord.  The hip and leg contractures have gotten worse.  The shunt in his brain is working properly.  The spinal cord is stuck to the scar tissue on his back. 

According to our neurosurgeon the tether looks relatively uncomplicated.  It means a surgery time of 4-6 hours.  The potential benefits are that Mason will be able to grow and the spinal cord will be able to move as he does, the contractures in his hips and legs won't get worse (fixing them will likely be more surgeries with the orthopedic surgeon if the muscles truly have contracted completely), and he won't have other neurological symptoms begin as the cord gets stretched even further with growth spurts. 

The potential drawback to the surgery is that the nerves and spinal cord may be damaged even further during surgery.  That's a really big drawback!  It could mean that Mason loses some muscle strength permanently in his core, which could translate in losing the ability to sit up on his own.  It could mean loss of the little amount of movement he does have in his hips (he can pull them up some).  It could mean loss of his sense of touch further up his abdomen and back.  It could be a lot of things.

Dr. G doesn't expect to see that happen.  The cord is tethered below Mason's current level of function, so he believes that even if anything were damaged during surgery it would be parts of the spinal cord already damaged and not working.

There can also be the usual surgery complications: problems healing, infection, leaking spinal fluid (would take another surgery to repair).

Mason is having surgery on Monday in just 4 days.  It will be St. Patrick's Day.  Dr. G expects Mason to be in the hospital for 4 days but if there are any complications with healing or leaking it could be longer.  I will be staying with him the whole time while Daddy and Grandma hold down the fort here at home with the other seven children.  Daddy will come visit a few times too.  During the first few days of recovery Mason has to stay laying flat on his back. He will be in some pain because this surgery will be on his back in an area where he has feeling. 

The next few days we will spend time preparing the house for me to be gone for a week, grocery shopping, packing, and spending time as a family.  He'll get a priesthood blessing Sunday evening and then we'll just take things a day at a time.


  1. Let the prayers begin! I was glad to hear that the news is perhaps not as bad as expected, and I think/guess that the quick scheduling of the surgery is a good thing so that you don't need to sit and stew and worry, and Mason's recovery and progress can begin that much sooner. Prayers will be following you throughout! All will be well!


  2. We will continue to pray for him and all of you. Love you guys!

  3. Praying for Mason. He is such a sweetie and I love the orange glasses.

  4. Continued prayers from our family to yours during this trying time.

  5. Praying for Mason -- and for you as you care for him next week, Tristan. You are a courageous mother and Mason is one adorable little guy in those orange glasses. I think he needs orange hospital jammies! ;-)

  6. Wow, this is a big one! Hang in there, Mom. I'll be praying that the surgery is successful with no further spinal cord damage, that there will be no complications and that Mason will heal well. For you, I will pray for strength, courage, comfort and support.

  7. I am interested in learning what contractures look like. If you have time, can you take a picture of what you are describing? Is a contracture muscle atrophy due to lack of use due to the nerve damage?

    1. I'll try to get pictures sometime today K. I don't really know how to describe the underlying cause (what the tension on the spinal cord is doing to cause this) but what it looks like is that when I lay Mason on his back and try to straighten his legs and hold his feet into position like they are wearing shoes or standing flat on the floor I can't get his leg into that position. The muscles have tightened/pulled in to a permanent position that keeps him from being able to be straightened out. It's a great questions - to see pictures.

      From being in constant pulled in positions his muscles and tendons have tightened or possibly shortened and are no longer able to stretch into a fully straight position. No matter how much stretching and physical therapy we do with him daily.

      They don't think the detethering will magically fix his body so the muscles will relax and stretch out again. However they think that the underlying cause (whatever signals are going through to have his body pulling in constantly) will be fixed and so if surgery is done to release the tendons and lengthen them or the muscle then it won't do it again. Maybe. Hopefully. Again, we've got a lot of uncertainty, which seems to be par for the course with Mason.

  8. Whew! You have a few chores on your plate, don't you! Regardless of what happens you are in God's hands. You are so faithful and full of faith. Your boy will be well; your family will be well; you will be well . . . no matter what. That said, I'll be praying for the hoped-for outcomes!

  9. We will be praying for him and you and the entire family!!!

  10. Thinking about you and praying for you and your little guy!

  11. Be assured of my prayers for you and Mason and your other children at home. And I agree! What's up w/ a hospital with zero orange pj's!!! Lori


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