Sunday, June 23, 2024

Expect the Unexpected - Week of June 17th

"No one is so brave that he is not disturbed by something unexpected." ~Julius Caesar

Cameron has completed 7 surgeries at our local Helen DeVos Children's Hospital.  The list includes 4 hip surgeries (hardware in/hardware out), 2 eye surgeries and 1 tonsillectomy/adenoidectomy.  Tuesday he was scheduled for his 8th:  the intrathecal baclofen pump surgery. 

An intrathecal baclofen pump, also known as ITB therapy, is a surgically implanted device that delivers baclofen, a muscle relaxant, directly into the spinal canal to treat spasticity. The pump is about the size of a hockey puck and is attached to a catheter that runs to the intrathecal space of the spinal cord. The pump then continuously delivers small doses of baclofen throughout the day to help reduce spasticity and improve mobility.  

Cameron's surgery was the first on the list at 8:00am.  It lasted over 2.5 hours and required two points of entry: the left side abdomen and left side back near the spine.  When we saw him in recovery, he had already made a new friend with nurse Skylar.  Soon after, we were transported to our new temporary home, Room 520.  

The nurses were welcoming and Cam's new "job" was to lay flat and relax.  This meant eating while laying flat, drinking, and everything else.  On Wednesday, Ms. Ann arrived in the afternoon to have a short visit with Cam. It definitely made his day!

On Thursday afternoon, Cameron was scheduled to sit upright to see how things felt. It was a big adjustment from being horizontal.

He felt good enough to drive around a bit in his chair.  The abdominal binder will be in place for a few weeks to be certain everything is healing nicely.  Two groups of doctors checked in on our son daily- the pediatric docs as well as the neurosurgery team.

On Friday, Cam started feeling headaches and a bit of nausea.  We attributed this to him being upright and in his chair the day before.  By Sunday morning, our release and transfer to Mary Free Bed had been approved.  However, our game plan was derailed.  Cameron became very ill Sunday afternoon/evening.  Our kiddo wasn't quite ready to leave the children's hospital just yet... but fortunately, this story has a happy next week's blog! 

(P.S. A big shout out to Uncle Jon & Aunt Betsy in honor of their 80th birthday celebrations! Cam wanted so very much to attend, but was there in spirit 🤗)

Camology Quotes:

When the anesthesiologist was driving Cam in his hospital bed down the hallway for surgery, the following conversation ensued between Jane and her son:

"Excuse me, but could you please slow down?"

"Please don't take it personally, Doc.  He always tells his mom that all of the time in our van!"  

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