Saturday, September 24, 2016

You know you should be asleep if...

Spencer had his procedure done on Friday morning.  It all seemed a little odd in a surreal kind of way.

We sat in the waiting room of the Cardiovascular Center at the University Hospital and the nurse came to take him back.  I was surprised that I wasn't allowed to go with him.  I think because everyone I talked to about this, made it sound like it really wasn't a big deal.

I hated sitting there watching him disappear at the end of the corridor.  This place, I realized, stirs up some pretty traumatic emotions.  Everyone is really nice but I really hate being here.  There is a gentleman that works at the front desk checking people in; I think I need to add him to our Christmas card list because he sees us coming and waves like he's part of the family now!

I'm not sure if something was amiss for Spencer's procedure or if we have a different definition of 'no big deal.'  He was awake for this procedure as well, with just lidocaine  to numb him up.

Here's how I feel about this procedure after listening to Spencer's account of his morning...


  • If they have to cover your face with paper for a procedure....You should probably be asleep for it!
  • If the medical team can't maintain their poker face... You should probably be asleep for it!
  • If you have to listen to words like, 'Oops', 'Oh no', 'Wow', 'Shoot', or any verbal sounds indicating dismay...You should probably be asleep for it. 
  • If the doctor says out loud, "I've never done this before on someone just skin and bones."...You should probably be asleep for it. 
  • If the nurse says, "Oh, oh...are we going to have to stitch that part?"...You should probably be asleep for it.
  • If they have to bring in a staff member just to distract you with idle chit chat...You should probably be asleep for it. 
Arghhh...It's annoying to me.  We can now grow spare organs in a lab, do face transplants but we still haven't come very far in the managing of pain or suffering.  When you already deal with daily pain from a chronic disease, you should get an 'escape from pain' free card for life!  One hour of blissful, pain free sleep for procedures that can become difficult should be the least you can expect. 

Spencer said they had a really hard time getting the recorder placed and when they went to shoot it in place, after creating a channel for it to sit, it went beyond where they had numbed him, tore the incision and who knows what else.  For some reason, they ended up giving him Epinephrine with the Lidocaine and that was bad news for him.  And...they didn't even wipe off the betadine before putting the dressing on! So, now he has that irritation on top of the pain he is dealing with. 

When the nurse came out to get me and Sam, she said the medical equipment team would give me an orientation of the device.  When I walked in the room, Spencer looked wretched!  He sat there shaking like he had just come down with a nasty case of Parkinson's.  His whole body just quivered and his face was the palest, paper white which made him look nearly translucent.  The medical team was almost finished teaching him about the device.  I had no clue what they were talking about.  I still don't.  I think it was wrong for them to give important instructions to a kid in shock. 

I was in shock.  I just wanted to get out of there. 

Spencer didn't do well all day.  He was in so much pain and had no feeling in his right arm and couldn't lift his left arm.  His chest was really swollen and red.  It was worse than the bone marrow biopsy.  He had a hard time taking a deep breath because of the pain. 

It was a lousy deal.  Still is.  He still can't lift anything because of the pain. Not the easy procedure we were counting on. 

After the procedure, we met with Pulmonology and she was nice.  I like her because she actually listens and seems to care.  She suggested she schedules a team meeting with all of our docs in one room so they can all get on the same page.  Wouldn't that be a novel and exciting idea.  I'm not going to hold my breath though.  She also wanted me to talk to a social worker about the stress we are under as a family but I denied that we are under any stress.  Sometimes, the lies just roll off my tongue with such ease. 

No new information on the boys other than a new Asthma med for Spencer. 

I've been sick this weekend.  Between a bout with vomiting trouble this morning and Lupus getting away from me, I couldn't even get out of bed til early afternoon.  It's been a long, hard day.  My kids rarely experience me sick so when I do feel bad, I think they think I've got one foot in the grave.  I'll admit, it feels weird to be down.  I'm not use to it myself.  



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