Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, 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.

Wednesday, October 26, 2016

What, Me Worry?

I couldn't resist the MAD Magazine reference,
since their anti-political outlook
seems particularly relevant these days

Anyway, Nick is headed to Boston Children's Hospital on Monday for a colon manometry procedure and I am worried.

What is colon manometry you ask?

It is a procedure that places a catheter into the colon and measures the pressure of the contractions that help move food through the bowel, evaluating gut motility. Since Nicholas has been diagnosed with low muscle tone, perhaps it is not surprising that his colon "muscles" are not performing adequately and he suffers from issues related to chronic constipation.

Anyway, I had been doing pretty good at keeping calm and preparing for our upcoming stay.

That is until I began to receive calls like this one from Children's:

"Yes, hello Mrs. Peters, this is Martha from Boston Children's. We know that Nicholas suffers from anxiety and were wondering if you would prefer if he received an NG tube for his med delivery?"

"Say what...?"

or this one...

"Hello Mrs. Peters this is the Motility Department over at Children's and we would like to reschedule his appointment to an early morning time frame since he suffers from Prader Willi Syndrome."

and finally

"Hello Mrs Peters, this is Boston Children's Hospital calling to ensure you received the two day cleansing procedure for Nicholas' upcoming procedure? And is there anything we can do to make his stay more comfortable? We have already spoken to Child Life Services."

I guess when your child is a regular at Boston Children's Hospital, they get to know you.

It appears that Nicholas has become somewhat of a hospital rock star, receiving preferential status and accommodation.

I know I should be pleased by all of this...but so far, all I am is nervous.


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