Things That Make Me Crazy

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Oh, so many things have driven me nuts in the past 18 months.  In no particular order, I'm venting here.
 
I hope the list doesn't continue to grow, but it might. 

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Things People Say

Everything in my life has fallen to crap, but I'm not complaining; I know things could be much worse.  Now, that doesn't sound like a bad thing on the surface, and I actually try not to hear it when it's said, because it's meant in kindness.  But to me, it just reminds me that we are the people that no one wants to be.  When people think of "what's the worst that could happen?" - they think of us.  And that sucks.   No one wants to be "those people" but here we are.

Every time I look at Sam, I'm reminded of how blessed I am.  Well, bully for you, I want to say (but don't).  Seriously.  You're so glad you're not him, huh?  Thanks.   

Is he okay?  (Huh?  What does that mean?  Is his ankle broken?  Does he need a band-aid?)

Will he ever be normal?  (Uh, if normal means you say terrible things in front of innocent children, I hope not.)

  • You're so lucky he doesn't cry
  • You're so lucky he's not up and running around
  • You're so lucky he can't talk back
    • all 3 said by too many people to count
  • So, can you still have children after what happened? (Oh, you mean the hysterectomy?) Yeah, can you still have children after that? 
    • said to me by a night nurse who was here to care for Sam.  I didn't sleep that night.    Don't 5th grade boys know the answer to that?
  • How long is he going to live?
    • parent of a special needs child (afterwards, I thought I should have said "how long are YOU going to live" but of course that's one of those things we only think later)
  • Of course he blinks.  Everybody blinks. 
    • stranger in an elevator
  • Are you his grandmother? 
    • ct scan technician.  Like I haven't been through enough!
  • I'm going to do my exercise tapes all night.  I just quit smoking and don't want to get fat.
    • same night nurse from above, said through a cloud of smoke as she walked in the door
  • Oh, how cute.  He sounds like he's drowning
    • Sam can't swallow, so he gargles.  Adorable?  not so much to us. 

Random disconnected thoughts:
 

We've had to find out on our own about almost every treatment we've gotten for Sam.  Even his specialists, who make a gazillion dollars a year, haven't researched his treatments. 

  • Despite the fact that I was high risk at 39 years old, had labor pains for two weeks, Sam's heartrate was going down, and I had been at the hospital in labor for almost 12 hours, the doctor left the hospital to go out to dinner.   Doesn't even seem possible. 
  • If Sam had been born almost anywhere else in the world under the same circumstances, they'd have put him in a hyperbaric oxygen chamber immediately, and expected full or near full recovery quickly.  He'd have been out of the hospital before me, probably.
  • Had he been born in some parts of Europe and the doctor DIDN'T put him in a hyperbaric oxygen chamber, he'd lose his license. 
  • If I had gone into labor in any other country in the world, I'd have been screaming to get back to the U.S.  
  • The FDA is approving a "cool cap" which should be available next month for use in neonatal intensive care units.  It should dramatically decrease brain damage for infants born deprived of oxygen.  It's basically an ice pack.  It cools just the head, just a few degrees, so the chemicals that cause brain damage aren't released.  AN ICE PACK.  Why didn't someone know?
  • We have to leave the country to get stem cell treatments.
  • The anesthetist was apparently having a fit waiting for the obstetrician to get back from dinner, yelling that he was going to do the surgery himself.  If he had, Sam would be having a much easier time. I might not have made it, but he'd not be fighting so hard every day if they had gotten to him quicker.
  • Although our insurance has been really good throughout all of this, there are some things that just aren't covered.  Any medical equipment is almost criminally high-priced, just because it can be.  Sam's bath chair, which is basically a beach chair with low legs, costs FIVE HUNDRED DOLLARS.  How do these people sleep at night?

A disclaimer:  For every impossibly thoughtless thing someone's said to us, a hundred people have had kind words which have helped tremendously.  While we've met a mountain of incompetence in the medical field, we have run across some wonderful, knowledgeable, caring doctors and nurses as well.  While some see Sam and nothing but his difficulties, so many more actually LOOK at him and see the miracle he is, and the boy he will be one day.  And for all of these people, we are constantly grateful.