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, November 2, 2012

MRI Scheduled

Did I mention I have trouble waiting?

When it comes to Nicholas and his health, the pain of waiting feels alot like suffocating to me.

Yesterday, I waited for the call from Children's Hospital, the call to schedule Nick's MRI.

As a nervous mother, I would travel through another hurricane.... just to know now what's going on inside of Nick.

The pleasant woman on the phone took all of Nick's medical info. She entered the data and clicked her "request appointment date" key.

"Well, it looks like the first available appointment is November 20."

I froze.

"I believe Dr, Nuss wanted to schedule this procedure while Nick's neck was still swollen so he could see any kind of possible cyst," I explained. "Does he explain this in his notes?" I asked.

"Ahhh yes," she said, I see it here."

Phew, I thought to myself, relieved that I did not have to call Dr Nuss' office to intervene.

"Well unfortunately I am going to have to transfer you to Boston. Only they can schedule these types of emergencies."

"OK" I said and waited to be connected. I struggled to breathe.

"Hello," said yet another pleasant woman on the phone. "I understand we need to get your son in early for an MRI?"

"Yes," I answered.

She too pressed her magic button key and once again.

"I too am getting November 20th as the first available. OK," she said, "now we need to have an MRI nurse speak with you to perform an assessment of Nicholas. She will need to call you back."

"OK," I said and once again I waited, feeling my lungs start to scream for oxygen.

Now it was time to pick up Weston. I was sure that with my luck lately, this was when the nurse would call. Thankfully, it was not.

Finally, the much-anticipated call arrived and once again a pleasant woman spoke to me on the phone. She asked me a million questions about our family history and whether we had any of a multitude of unusual diseases. When she was done, she reviewed the MRI procedure and provided me with some instructions for our upcoming appointment.

"Now I will transfer you back to the scheduler." she said.

The previous scheduler was back on the phone and as pleasant as ever, but of course now having trouble getting an earlier date on her computer.

Once again she asked me to wait. I am ready to pass out.

Inside I am screaming........please God just give us a date.

"OK she said, how's Monday, November 5 at 5pm?

"I'll take it," I said and finally I am able to breathe.