Pacemaker Round 2

It's been a whirlwind of drama around here.  On Monday, I spent the morning trying to get in touch with our Cardiology team.  I started with a call to the nurse who works for both Sam's doc and Spencer's doc.  I explained to her what happened on Saturday and she said she would look at the loop recorder information and talk to the docs and call me back. 

She did call me back and said, "The doctor is in a procedure but I'm pretty sure he's going to want you to come down.  We have an opening on Thursday."

We have been planning a trip to Canada on Thursday so I said, "No, we can't make that but the following week we can."  Here's the problem...Horrific events like this are becoming so commonplace that I'm really not processing things well anymore.

She responded, "Kathy! Your son died on Saturday.  You aren't going to Canada."

"But we haven't seen my family in so long and the kids have been..."

She cut me off, "Kathy, you aren't going to Canada this week and not next week and probably not anytime soon.  Your son is very sick.  Are you okay?"

No, obviously I'm not okay.   She said she would call me back when the doctor confirmed the time.

Sam's cardiologist, Dr. F called me back mid afternoon.  I was in Pocatello painting an orthodontist office.  He said, "Kathy, I want Spencer in the hospital this afternoon and we will do surgery first thing in the morning to place a pacemaker.  He flatlined on Saturday morning at 4:15 am for nearly 30 seconds."

That's when it all came crashing in. 

By the time I made all sorts of arrangements with work, it was after 8 pm before I left home to get to Salt Lake. 

This morning, they wasted no time prepping him for surgery.  It's been a horribly long and difficult day.  I've only slept about 8 hours since Saturday.   It's really hard not to compare this experience to Samuel's.  Spencer's surgery took a little longer but they put in the exact model and he needed two wires as well.  They confirmed he has sinus node dysfunction as well as a nervous system problem.  Because of that, the pacemaker will keep his heart beating but not prevent him from passing out entirely because his veins and arteries have problems.

Spencer is so thin and sick that there is nothing to pad the pacemaker so it's more prominent in his chest and rubbing on bones so he is in so much more pain.  He hasn't been able to do anything on his own.  He has had to be lifted in and out of bed.  He hasn't been able to move himself in anyway so it's been hard and strenuous work to care for him. 

He had to lay flat for 4 hours.  When they got him up to go to the bathroom, he passed out.  I could tell something wasn't right and I didn't want them to make him stand let alone walk.  He started swaying and his face drained of color and he said, "I'm going down."

It was crazy making!! The nurses started yelling for help! Pushing the emergency buttons and yelling at Spencer, "Stay with us Spencer! Spencer, stay with us!  Don't go down!" and then yelling for someone to check the monitors so they knew what was happening, if they needed to start CPR.  They were moving as fast as they could back to the bed.  Keep in  mind, his left arm is tethered to his body and his right leg has an incision in the aorta so at this point, he's a rag doll and they can't move two of him limbs without doing major damage to his heart so it was not an easy task moving a person of just dead weight. 

The room filled with people and chaos and I freaked out!  I don't know how I made it through the maze of people but I ran down the hall and sobbed.  I just can't watch him lose consciousness one more time.  I am just filled with dread.

Things settled down and they got him back in the bed.  He can hardly stay awake.  The pain is pretty bad and he just keeps trying to pass out.  His pacemaker is pacing about 30% of the time compared to Sam's 50%.  His heart is still racing and if that doesn't start to get better, they will need to go back in and switch out the pacemaker for one that has a defibrillator as well. He's been throwing PVC's a lot and I'm not sure what that means exactly.  The doctors are watching them closely.

I just keep being reminded of how serious this is.  So many nurses and doctors heard his story of being in Zion's National Park when his heart quit.  They have all said that he is one lucky boy to be alive.

I got a solid 45 minutes of sleep after all that scary stuff but I'm exhausted.  Tonight, we tried again to get him up and it went much better.  I even made him walk a half a hallway length and he did okay.  He is able to maneuver  his body on his own better than earlier.   What a week! 

Here are the usual keepsake pictures of the whole ordeal...

An apprehensive boy- preop

starting IV's and monitors

He's off

Post op.  He's still on oxygen tonight.  Ugh.
He was so funny as they tried to wake him up from anesthesia.  He was answering the nurse in lyrics from Rap songs.  She said, "You're all done Spence and back in recovery."  Spencer replied, "We're goin down and comin back around."  He even sounded like a black rapper except his speech was slurred but you could tell he was trying hard to be legit.  I was a little embarrassed because all his nurses have been African American and here's this pasty white kid with red hair and freckles thinking he's P-Diddy.   I've never seen Spencer act weird coming off of anesthesia and it was only versed and pain meds he got during surgery but he was out like a light except to answer questions in rap form. 

Well, that's it from the trenches.  6 more weeks and we will do this again...



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