Friday, March 21, 2014

Mason is Home - Surgery Update

Mason's surgery journey is not over but I want to share details of the week so far before I forget them.  For those wondering, Mason came home Thursday evening.  Now let me back up!

Monday morning Mason and Mommy went to Children's Hospital for his scheduled Spinal Cord Detethering.  He spent his time in pre-op playing and relaxed.  When it was time for anesthesia he went to sleep with the mask while snuggling Mommy, no problems. 

I spent several hours waiting while Mason had surgery.  Dr. G came to see me when the surgery was finished.  Everything went smoothly.  The spinal cord was very tightly tethered.  He released it and tested some nerves in his legs to see if there was any function in them.  One responded a bit, the other did not.  What that means only time will tell.  Dr. G hopes Mason will not need another detethering for years, his hope being 10 years, but with all things like this we just cannot predict how long before it happens again and causes nerve problems.

Mason and I were moved to the Neuro floor of the hospital and thus began the longest 2 days ever.  Mason needed to remain laying flat.  We watched a lot of Curious George using the Kindle Fire.  He struggled with pain management.  In the times we had to roll him to change a diaper it was agonizing. 

On Tuesday morning Mason was given several medications and one made him throw up everywhere.  We had to clean him, the bed, and everything else while keeping him flat.  It hurt.  Even worse, on day 2 Mason had to get a bandage change because a nurse tried to do his enema and got his bandage wet.  It was the worst things I've ever heard from my little man and halfway through one of the three nurses went running for morphine to try and help him get through it. 

By Tuesday night at midnight Mason just wanted Mommy to lay down with him. (Up to this point he was in a hospital crib).  So at 12:03AM we got a regular bed and carefully moved Mason, keeping him flat.  Mommy climbed in bed and we tried to get some sleep.

Wednesday we were given the ok to start sitting Mason up.  We started slowly, with him reclining on me.  It hurt him to move but once he was in position he was okay.  At this point there were no leaks of cerebrospinal fluid (CSF) from his back. 
Later in the afternoon he sat up with the help of his hospital bed to eat dinner.  Pain management was going better, Mason no longer needed morphine, but I had to stay on top of nurses to get his medications on time. 

Thursday Mason spent the morning lounging in bed, working his way back to sitting with the bed being raised.  At lunch time he demanded to be allowed in his wheelchair.  My tiny dictator!  I picked him up and he didn't cry.  It was uncomfortable I am sure, but not painful like before. 

Once he was in his wheelchair he ditched the idea of eating lunch and took off out of the room.  We spent the next 2 hours wandering the halls of the floor, visiting the playroom, and 'walking'.  Mason just wanted out of that hospital room.  Toward the end of that he was tired and let me push the wheelchair, doing laps around the halls.

Finally we went back to his room for cathing/diapering.  He did well on the transfer to the bed and it was then that I realized just how big a difference a day can make.  He truly felt better. We were heading home. 

It is now Friday morning and Mason is happy and doing well.  So far his back is not leaking CSF and he is thrilled to be out of the hospital.  There is nothing quite like being in your own home, getting into things, and surrounded by family.

He also thinks the food at home is way better than hospital food.

Movement and Function

I want to make a quick note here about the results we're seeing so far from surgery. 

  • At this point Mason is moving both legs at the hips better than before surgery.  Its obvious that he's stronger there. 
  • The hip and foot contractures - the jury is still out.  I think his feet have more flexibility/range but it's too early to tell.  We will get right back to doing his leg and foot stretches and see what happens while we wait for more appointments with other doctors in the future. 
  • Mason's sitting balance is off.  Considering how many muscles it takes to sit and balance, and that a portion of those were just cut on Monday, this is not surprising.  As his back heals we expect he will regain his balance.  He also can't sit himself up at the moment, which takes using a lot of back muscles in ways that hurt right now.  Again, we expect this will come back as his back heals. 
  • We have no idea what this surgery has done to Mason's bladder and bowels.  We will have some tests done in 3 months to check the bladder, we will continue nightly enemas and watch what happens with his bowel function. Our hope is that things stay the same, that nothing got worse (lost nerve function more).  Only time will tell.

10 comments:

  1. This made me so sad to hear how much pain he was in. But he's a trooper! I'm glad he's home now and feeling better. Hugs to you both.

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  2. Oh man I had no idea how complicated his problems are. Hoping for a fast recovery from the surgery.

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  3. Wishing you a speedy recovery little man! So sorry for all your pain and suffering. Tristan, you are one strong mama. I can't imagine how difficult this must be for you. I'm sorry for the struggles and yet, you have taken them and are a shining light to others. May the good Lord bless and keep you!

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  4. I'm so glad he's home and doing well. That's a tough little guy you'v got there!

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  5. Continuing to pray for your sweet boy!

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  6. I'm thrilled to hear that he has hip function!!!

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  7. Glad to hear you could go home that quickly.
    And it's great that he gained some strength and tension might be going down...
    My daughter had problems with balance when sitting when she had grown a bit...
    They say the spinal cord grows less slowly.
    Our neurosurgeon also mentioned a "spinal shock" once... like after the birth and the first surgery a lot of function needed some time to "wake up"
    Mason had been used to doing thing with his resources... now things have changed and he needs to find new ways... he certainly will!
    And remember the spinal cord anesthesia from birth... hurt a lot didn't it?
    Now I can imagine if they cut around there it has to cause a lot more pain.
    Thank God children get over such things so quickly.

    All the best wishes from Germany
    Steffi with Amaya

    P.S. Remember osteopathy once he's healed fully... it could help to prevent further tethering or symptoms of it.

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  8. I cried when I heard he had so much pain during recovery. I rejoiced to see how quickly he recovered enough to get home. God certainly has a plan for your little man and He's given him the strength to get through it. I'm still praying for your entire family. Bless you Mamma for being so strong for your little man!!

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  9. You have a very brave son, and I'm hoping his surgery will work out. I stumbled across your blog and I've enjoyed reading your posts. As 43 year old with spina bifida I just started writing a blog about my journey with spina bifida, feel free to check it out.
    http://iammorethanjustdamagedgoods.com/

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  10. Hi, what a wonderful family you are! I'm mom to 8 yr old girl with Spina Bifida. Julia is wearing AFO's and she can walk independently. Since she was 9 months old we have been massaging her legs. We start from bottom of her foot and we go up her leg. It takes us 20 to 30 min. Ask your PT to show you how to do it. By massaging Mason's legs you help muscles to be less tense. We learned that in Europe from therapist with 30 yrs of experience. Good luck!

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