Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Friday, January 27, 2017

The Good Doctor

OK, so remember I told you how special needs parents
are a lot like the mad scientists of the parenting world?

Well, we are also the good doctors
(whether we like it or not)

Queasy stomach for medical procedures?
Walk it off.
You don't have a choice.

In enduring hospitalizations
or complex medical procedures,
your child will take his cue from you.

So if you're nervous, stressed or scared,
while your child is being treated,
You better prepare yourself
for the powerful return of energy
that is about to bounce back at you

If you are not a special needs parent,
and you have a queasy stomach, you might want to stop reading here.

Nick's appendicostomy surgery is scheduled for March 13. Last week, we met with his wonderful new surgeon, Dr. Dickie. She is an expert in the area of bowel management and began her process of educating the clueless parent on the up-coming surgery and necessary pre-op procedures.
I consider myself a seasoned special needs parent, having endured many years of g-tube feedings, AFO's and EEG's. It takes a lot to intimidate me.

I was reminded however,
in rather spectacular fashion,
what it means to be humbled.

Dr. Dickie explained that before the surgery, we needed to prepare Nick's lower GI tract. To do this we needed to begin a nightly regime of enema treatments. I explained to Dr. Dickie that the enemas we had performed at home in the past were not effective. She looked at me and smiled. Then withdrew from her cabinet, a surgical kit.

Nothing up my sleeve.....presto


And began to instruct me on the proper use of a Foley catheter. These devices are typically used in folks with bladder issues, however, Dr Dickie has found them to be useful in the management of chronic constipation.

The kit consists of a tube that is inserted into the rectum and then inflated with air from a syringe. This prevents the enema solution from sliding back out too quickly.

An IV bag is filled with enema solution, a tube from this bag is then connected to the Y end of the  balloon catheter and delivers the solution into the intestines. The procedure takes about an hour and if done correctly will produce a bowel movement and evacuation of a blocked intestine.

Easy enough right?

Try telling Nick that.

Dr. Dickie explained that we would need to create a fun and relaxing environment for Nick so he would be comfortable when we performed this nightly routine. She asked that we report back to her with our results.

And so, home we went with a bag full of supplies and a mind overwhelmed with the realization that our lives, although hectic enough, had just become more difficult.

Revolt against the absurd

Don't worry dear readers, for Nicholas, in his infinite ability to embrace the word resilient, has endured with an unusually calm sense of strength and courage. He is my hero.

But more on that later.

p.s Did I ever mention to you, that before I was married, I sold plastic tubing to engineers who designed medical devices like g-tubes and Foley catheters?