Little's Life

Little's Life

Wednesday, July 30, 2014

The One Where I Forget His Duchenneversary

Yesterday was the third anniversary of Little's diagnosis.  I forgot and I think that's awesome.  Had I thought about it that morning, I may have had a bitter day.  It may have clouded over everything I did that day, and yesterday was hard enough without it!  Here is what he looked like at the time of his dx:
Yeah, I know, most adorable 18/19 month old ever.

On Friday, Little had a surgery to remove dead and damaged fascia from around the site of his hernia operation from last March.  Monroe Carroll Jr Children's Hospital at Vanderbilt University was once again stellar in their treatment of Andrew.  The anesthesiologists came in completely prepared and knowledgeable of his DMD and the risk of MH and had precautions already in place.  MH = Malignant Hyperthermia.  Basically, a person with Duchenne can't metabolize inhaled anesthesia like your average person can.  Little's body, instead, will attempt to burn off the gases by raising his body temperature and in the process, burn himself to death.  Like literally boil his organs.  Scary stuff.  So there is no such thing as a "minor procedure" for these guys when anesthesia is involved.  Andrew also experienced emergence delirium last time, so the anesthesiologists had a plan in place for that, too.   He was given some oral medication to make him loopy and it. was. hysterical.   He was basically drunk.  He shouted "HEY, YOU!" like a belligerent frat boy at the nurses, ROARED his plastic dinosaurs, and flipped and flopped and rolled so much that we had to raise the bed rails.  It was so funny, that it kept me from crying when they took him back for surgery.  I wish someone would have recorded it.  Next time. 
Stethoscopes are weeEEeeeIrrRd when you're on the loopy medicine.

The surgery took about an hour.  Doc told us the damage was deeper and worse than he had anticipated and that he believes Little may have some form of a healing disorder.  We already figured that his body had attacked the stitches that should have dissolved last year, so it really wasn't that surprising to hear.  Doc told us we had an extremely funny little boy.  So that means he was awake when the doc came in and showed him his drunkenness.  No emergence delirium this time, but it was still quite unpleasant.  The pic below is from about an hour after he started coming around and you can see how unhappy he still was.
Recovering at home.
Playing Operation after his operation.
He had a drain tube in his incision that had to be gauzed and redressed quite frequently.  Because of that, we couldn't bathe him (still can't for about another 48 hours) nor could we shower him for at least 72 hours.  HE WAS STANK.  At about hour 73, I put him in the shower.  He hated every second of it and insisted I wrap him up like a burrito and lay him down so he could recover from the trauma of the shower.
Oh, and this happened the day after surgery.  Thank God the closet door was open and caught the dresser before it could crush Andrew.  He was standing over to the side, too, so those two things kept him from getting hurt.  He said he was pulling open the drawers to check if everything was still in there.  O....k.....?  All of my wedding glassware was shattered.  So that sucks.

Yes, I will be tethering it to the wall.  What's really crazy is that I had just told Mister that morning that I tethered Little's dresser to his wall and Mister looked at me like was crazy.  Well. 

This was our one outing while he had the tube in.  We were both going stir crazy and I needed to exercise.  I can't sit around for 4 days,  I just can't. 
So yesterday, on his Duchenneversary, he had his drain tube removed.  It wasn't bad at all, though he'd disagree with me.  Only took about 30 seconds and now we don't have to go back to Vandy for a whole month!!!! 
I took him to the zoo to reward him for being so brave.
I hate goats.  HATE.  They are what I believe Satan would look like on earth.  But, it was for him, not me, so I went into the nasty petting area so he could touch ALL the goats.
 I want you to look at this one.  Like REALLY look at it.

 See what I mean?

 He loved the flamingos.  We must have watched them for 15 minutes.  I was so bored.  He was not.

We were flagged down at the meerkat exhibit by a family who wanted to learn about his DAFOs (feet) and later by a PT who wanted to learn about his Kiwi.  I knew she was in the field when she could tell right away that it wasn't your average stroller.  Regular folks can't ever tell, they just think its a really cool stroller.  We can't go anywhere unnoticed.  It's frustrating sometimes.  I mean, everystinkingwhere we go, we attract attention.  There is never a "we snuck in the back and slipped out unnoticed when it was over" situation for us.  Everything is an event. I'm used to it, mostly, since that's how it's been for me for as long as I can remember, but dang it gets tiring when I just want to have a few hours with my son, left alone.  That's selfish, I know, and it's a part of my personality that I constantly struggle with.  I may seem quite extroverted to those around me, but I'm not.  I would much rather be left alone than approached spontaneously.  I am moody and I am aware of it.  If I'm in a friendly mood or in a situation that is set up for me to entertain, then bring on the attention.  But if I'm just trying to blend in and be normal, I may not (ok WILL not) greet you with a big ole sincere smile.   I was able to help those people out by letting them learn about DAFOs and how to obtain them for their son and the PT got to test out the stroller in person before ordering one for a client, and that's why I'm here.  I get that.  I just fight it sometimes.

After the zoo, we went to a back to school cookout with some friends from church.  From there, Andrew and I attended a friend's baptism - which is ALWAYS an awesome way to end the night.

Anyway, that's the story of what we did on his 3rd Duchenneversary and how we forgot all about it until the next day.  I hope I have many more years like this instead of remembering and allowing it to poop on the whole day.