Sunday, November 24, 2013

Surgical Setbacks

IMG_20131123_193115I need to preface this post with a warning and a few words.  The warning is that there will be some medically graphic photos in here of Mason’s wound.  I feel the need to share this post because as a mother I wish I could have prepared myself for what we are going through.  I wish I had known what to expect. 

This is one of the main purposes of Mason’s blog – to share a real life glimpse at life raising a child with Spina Bifida.  Most of the time it is a joyful life with many things to celebrate, many evidences of God’s hand at work in our lives.  Then there are the times like now when it is hard.  It can be overwhelming.  And yet even this will ultimately show God’s hand at work in the intimate details of our lives.

Last Wednesday Mason had surgery to close a wound we have been working to heal since July.  The first day or two went about as we expected and he was happy.  We were doing all we could to keep him content with the different movement restrictions and he was doing well.

Friday night Mason developed a fever.  Saturday morning his incision began leaking a large amount of fluid.  By that afternoon it became obvious that his stitches were coming apart and his incision was swelling and opening.  After a phone consultation with the plastic surgeon’s resident on call Mommy and Mason headed to the emergency room at Children’s Hospital. 

IMG_20131123_192847As is usual for Mason he charmed the nurses and doctors, waited patiently, and explored his hospital room.  In the mean time mommy worked through the chain of command to get the ER to page plastic surgery.  It took time but finally we got to see who we needed to see.

What they believe happened is that a pocket of fluid built up inside the incision and when it burst it broke some of the stitches. This was a huge step backwards and ultimately means Mason will require another surgery.

Before that can happen a few things need done.  Mason is taking a round of antibiotics to clear up any potential infection.  They swabbed cultures of the fluid and we will see if those grow into anything suspicious next week.  While we wait for our day-before-Thanksgiving appointment we have a new bandaging protocol, one that every other doctor and resident was sure I had heard wrong. 

You see, our plastic surgeon Dr. P has cared for Mason since he helped close his back the day he was born, after the neurosurgeon put Mason’s spinal cord back inside his body.  Dr. P is very familiar with Mason’s case and he is very familiar with me.  He knows if it something needs done for my son I will do it.  He decided that I was to pack Mason’s wound with an iodine soaked strip and then change it each day. 

The other doctors were sure I was wrong.  Parents don’t do that.  They don’t reach into an open incision that deep in the body.  They called Dr. P and he straightened them out.  I was taught what to do and home we went six hours later.

100_6162Today was the first bandage change and I took pictures.  Graphic pictures.  The incision has opened completely now.  There is something horrifyingly wrong with being able to see inside your child’s body from the outside.  The incision is deep.  I don’t know how long we will be working with this before Dr. P feels it can be closed surgically again.  I don’t really want to know. 

The first picture is what a finished bandaging looks like.  The plastic on top is Tegaderm, a sticky plastic wrap on steriods.  This is trying to keep poop out of the incision and everything else in.  Beneath it is a layer of gauze with the end of the packing material sticking out.

100_6167Here is a picture of Mason’s incision totally emptied of packing.  As you can see it is wide and long.  I’m estimating it is about 1/2” wide open, 2” long, and deep to the bone.  That white spot in the middle is his tailbone.  There are yellow layers of fat and other things visible.  You can even see the broken stitches in places.  It is frightening.  As Mason’s mother it makes me cry to see it.   

100_6168Here is the fresh packing just about filling the incision, ready for the gauze and Tegaderm to be applied.  The nice thing for Mason is that he can’t feel any of this.  Can you imagine how much pain this would cause if he was not paralyzed?  The down side to not feeling it is Mason is as raring-to-go as ever.  He is on the move and playing just like normal.  It’s hard to convince him that if he’s not in the wheelchair he needs to be laying around playing on his belly. 

What’s Next?

I don’t know.  We go see Dr. P on Wednesday.  He may schedule surgery for the next day, the next week, or months from now.  This pushes his spinal cord detethering out indefinitely.  We have to heal his bottom before we can start messing around just above it with another incision.  In the mean time we’re enjoying Mason’s zest for life and trying to find ways to make things work.

11 comments:

  1. Thanks for sharing it helps me know what to pray for your family. Praying for sweet Mason and the rest of the family. :-)

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  2. Praying for you guys. Thank you for being such a great mom to Mason, for being such a great advocate for him, and for providing this information to help others. May you continue to be full of calmness, wisdom, and grace in this journey...

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  3. Tristan, I just wanted to shout out some encouragement to you. Your boy is so super cute and the wheel chair video is so cute. It's fun to watch Mason start to talk. You are doing a magnificent job with your other children as well. The juggling you and your husband do in order to keep everyone cared for, fed, educated, and grounded is amazing. Don't lose sight of all the great things you are doing.

    In regards to Mason's packed wound care. Yep. It makes ya sad. It looks pretty scary. Yet, as an LPN with experience with wounds that have looked just like this, healing using the techniques they are using can and does happen. They are so insanely slow but they can happen.

    We, those of us who lurk quietly out here in cyberland--and those who are more visible, are praying for God to heal your cutie pie with miraculous speed. We pray that he might give you strength and endurance as you run this long and weary race. We pray that you may feel God's peace which passes all understanding during these times. We pray for the medical staff for wisdom and skill as they decide upon the best methods for Mason.

    God's timing and will are perfect. I pray you can feel us all lifting you up. I pray you have hope. We love you and are here helping to hold your hands up just as Moses once had help as well.

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  4. Poor little guy! What a trooper he is and your whole family for staying so positive through it all. You are one amazing woman!

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  5. My thoughts and prayers are with you. I've had to walk a similar path and it was not easy. It stretched me like I never thought was humanly possible. Not only physically but spiritually possible. I would pray during those days that God would give me energy to do all the things that were required of me. I rarely felt like I had more strength after pouring my heart to our Father. But now that my baby is with Him, and that "mantle" has been removed, I can very much witness that I was given a lot of extra energy to handle to the things I did. My prayer is tonight that our Father can sanctify your home and family and allow you to feel His endless love.

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  6. I'm so sorry Tristan. I can imagine how hard this is. I hope and pray you can get some answers and a plan soon. Praying for your little guy and sending you a hug.

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  7. http://www.youtube.com/watch?v=axej89b0s24

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  8. Hang on. That's all I can offer . . . except prayers on your behalf. So I'll do that.

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  9. I second Kristi- everything she said is spot on. I couldn't have stated it better. God bless you.

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  10. Because of all you've shared about Mason's wound, I was able to spot one beginning on my baby in the exact same place and prevent it from getting worse. Thank you very, very much! I'm praying for healing for Mason. You are a Supermom! It's a heavy cape to wear (I wear one, too, as I turn screws attached to my baby's skull to make it bigger). I wonder how I get through some days, and others I celebrate being a Supermom and think it's a breeze.

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    1. I'm so glad this was helpful for you K! It seems like these precious medically complicated babies should be delivered with a superhero cape for mom, doesn't it? LOL Or maybe just one for them!

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Thanks for commenting!