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.




Monday, March 18, 2013

Medically Complex

Oh how I hate those two words.

It is the description Nick's neurologist uses to describe his medical fragility, his lengthy list of diagnoses and his lack of resiliency in fighting infection.

I hate these words not only for the weakness they imply, but also because I forget them.

Nicholas is struggling to recover fully from his tooth surgery on Friday. He is cranky and short-tempered. He is difficult to redirect. His stuttering has worsened and he is having trouble sleeping.

I wonder if this medical complexity is causing him to struggle with the side effects of anesthesia?

During his procedure, the anesthesiologist used a variety of sedatives to help him sleep. When he was transported into the recovery room, his hair, skin and clothing reeked of the powerful smell of a potent gas. As I sat beside Nicholas, I could almost taste the bitter drug and began to feel dizzy.

For two days after his surgery, his breath carried the distinctive smell of the powerful medicine.

Last night, Nicholas had difficulty falling asleep. He wiggled back and forth in his bed. He complained that something was tickling him.

So today, I kept him home from school.

In my mind, I hear Dr Takeoka's voice telling me over and over.....He is medically complex.

I realize the painful truth that a strong spirit does not guarantee a strong and healthy body.

Today, Nicholas is relaxing quietly in the living room. He tells me throughout the day, that I should not schedule that appointment for him ever again!

In the past 11 years, Nicholas has had a lot of surgery. There have been g-tubes and tonsillectomies, orchiopexy and lacrimal duct operations. He has weathered them all with his usual brave spirit and resilient attitude. But this procedure was different, the recovery more painful, it is an experience he will remember for a long time.

"Mom," he said to me with a serious tone,

"Please don't make me go on that appointment again. I want to see Dr Lindi."

Dr. Lindi is our local dentist. She is kind-hearted and gentle. Her quiet demeanor has helped Nicholas to tolerate his most difficult of dental appointments.

Yes, this tooth pulling episode from hell has made Nicholas realize how good he has had it.

I am anxious to hear what he says to Dr. Lindi on our next visit to the dentist.

In the meantime, it is a quiet day for Nicholas and me.