I 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.
As 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.
Today 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.
Here 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.
Here 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.
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.