So Mason is having 'what' done?

We are only 5 days away from surgery.  We're excited for the changes, nervous about the procedure and hopeful everything goes smoothly.  We're planning a work weekend but I also want to make sure we take some time to get Mason swimming since it will be 6-8 weeks before he'll be able to do that again.

We check in at 6:15 am Tuesday morning but that time can change last minute. They call us Monday to confirm. "Auntie" Megan has offered to spend the night Monday so that she can get Miss JJ up and off to daycare.  Once checked in, we're not exactly sure how long before Mason is sedated and the procedure starts. 

They start by making an incision in his lower right abdomen.  They can put it on either side, below his belly button, but above his hips.  We elected for the right side since his G-tube button in on the left side.  They will suture the pump (about the size of a hockey puck) into his abdominal cavity.  Connected to this pump will be a long tube that ends with a needle. The needle is placed into his spine.  This is how the baclofen gets pumped into his spine.  By placing it in a specific area of his spine, it ensures that the spasticity of his muscles is only relaxed in his lower extremities.  When he sleeps, this medicine may go up higher in his spinal fluid which may give his upper extremities more relaxation but that may really help him get a nice peaceful night's sleep.  (We had to squeeze in another round of botox because he was so tight and we couldn't wait any longer before this procedure. For those of you that don't know - it was delayed 4 weeks due to pneumonia.)

The procedure itself takes 2-3 hours, then he's in recovery, then he's in ICU for 24 hours.  The biggest risk is infection. There is also risk that some spinal fluid can leak out and cause a "spinal headache". Mason is heavily sedated for about 24 hours so that he doesn't try to sit up.  After ICU, we are in pediatrics for 2-3 more days to monitor for infection.

Mason will wear an abdominal binding for 6 weeks (hence the no swimming part.)  He shouldn't be twisting, as it can cause the sutures (that hold the pump in place) to jar loose. 

Mason will need his pump replaced every 6 years.  They are set to stop working at 7 so they like to replace them prior.  Mason will go to the doctor every 4-5 months to have the baclofen filled in his pump (they numb the skin and inject the medicine via syringe into a silicone port on the pump.)

Even though this procedure has been discussed a dozen times with us, I'm amazed at this technology and the way it brings relief to those who need it. This same pump placement procedure is used for patients that pain relief in later stages of cancer. We hope that it is successful and brings the relief Mason needs.

Here is a you-tube video of the procedure if you care to watch:
It is graphic, FYI


Deciding to have this procedure with Mason was a tough decision.  No one wants to have surgery, much less put their child through it. However,  the thought of Mason's comfort every day is what really helped us make this decision.  We had a trial intrathecal dose of Baclofen given to Mason several months of ago and the outcome was amazing.  Mason seemed so happy and relaxed.

Here's video evidence!


We'll post on here a lot the next couple days.  Keep Mason in your thoughts and prayers! :)