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.

Sunday, February 3, 2013

Nine North

Nine North is the Neurology floor at Children's Hospital in Boston.

I believe that every citizen should be required by law to spend one night of their life on this floor.

We always return from our experience here, feeling incredibly humble.

I saw so many struggling families on this floor. I wondered what happened to them? How did they end up here in this hospital? What was their story? I wondered if folks were wondering the same thing about us?

We arrive at the usual surgery admitting area where Weston pretends he does not want his picture taken.

Nicholas watches his favorite fish tank. Every one of these tanks at Children's is designed to look like the movie, Finding Nemo.

No one appreciates this more than Nicholas, who is sporting his special "buttons" hair cut.

 As we arrive on the Neurology floor, we find ourselves walking slowly behind a young girl. She looks like she is about sixteen. Her head is shaved. A long scar runs lengthwise down the back of her head. Other, older scars criss-cross the right side of her skull. I wonder if she has been here before?

She is trying to walk but her body leans uncontrollably to the right. She plants each foot carefully, one step landing heavily in front of the other. Her brain, it seems, is working as hard as her body. Her mother, is on her left, holding her arm carefully and whispering encouragement into her ear. I want to help. I wonder what this family is experiencing? Is it a car accident, cancer, a tumor? I lower my head, and whisper a prayer. It is not enough. I struggle to find a way to reach out to this family.

"Mom," Weston whispers to me. "I think I want to cry."

"I know Weston," I said, "me too."

As we arrive at the nurses station, several Neurology staff members are happy to see Nicholas and greet him with big smiles. They remember him. I don't know if this is a good thing, or a bad thing but the staff on this floor know us all by name.

"Hi Nicholas, remember me?" asked Cheryl. "I am going to help you put your buttons on today."

"You are?" Nicholas asks.

"I am," Cheryl answers.

'Oh thank you," Nicholas says as if she has just given him her last dollar.

The short hair cut and "tape" application work like a charm and for the first time ever, Nicholas tolerates the button procedure without any tears.

 I let out a sigh of relief.

Our room is a small one. The shade has been pulled down. As I open it to see what our view looks like, I am surprised to see this.

It is part of a construction project that will eventually become a new wing for the Neurology floor. I close the shade, not wanting to scare off the construction workers when I change into my pj's.

Pete and Weston decide to head home for the evening. I settle in to our new digs. This time, my bed for the evening has a few holes where several mattress springs are now poking their metal teeth through the fabric.

Our nurse for the evening, introduces himself and looks a lot like Ted Kaczynski.

But Una bomber he is not.....as he is sure to tell me how to make a perfect pillow mattress for my new bed of nails. He leaves without saying a word and returns carrying ten pillows, a mattress pad and a ton of pillow cases. He is the kindest nurse I have ever met.

"How did you ever think of this?" I ask my new friend and he replies with a smile....

"Ancient Chinese Secret."

(A reference to an old Calgon commercial for those of you young pups out there)

I decide to explore my surroundings before bed. I walk down to the end of the hallway. There is a room guarded by two security officers. Why were they here I wondered to myself?

Nick and I settle in for the night.

With a Dora DVD softly lighting our room.

During the night, Nicholas and I observe two Code Reds. We watch the hospital staff run into the room at the end of the hall. My question about the guards is silently answered.

The rest of the night is quiet. There is no one from house keeping waxing the floor, this time. Nicholas sleeps very soundly. I am pleased since this means that his EEG will provide us with some good results.

I do not sleep very well, despite my well designed new mattress. My brain is on overdrive, thinking about Una bombers and code reds and nurses running down the hall.

Nicholas is awake early and it isn't long before Pete and Weston show up.

Perhaps this photograph will give you a good idea just who Weston takes after?

Dr Takeoka enters the room with his staff as they make their morning rounds. He tells us he will come back to speak with us after his rounds.

Dr T knows I like to ask alot of questions......

He returns alone and tells us that Nick's EEG is abnormal once again.

I take a deep breath and it feels like my heart stops for just a second.

He explains quickly that Nicholas is experiencing a single sub clinical spike every hour or so while he sleeps. The abnormal activity is located toward the left frontal lobe of the brain. This is the area that controls attention, focus and speech activities.

I am stunned. I was not expecting this kind of result. I assumed his EEG would be normal. In thinking it through however, I realize the effected brain areas Dr. T describe, actually correspond to some recent difficulties Nicholas is experiencing with attention and speech.

Dr T explains that ironically, the Provigil, I wanted Nick to try, although a narcolepsy medication, will most likely be the right solution for Nicholas in relieving some of these spiking issues. He told us that it should also help to normalize Nick's sleep schedule, allowing him to sleep more soundly during the night.

He explained that since this medication is considered a stimulant (like Ritalin), it will be necessary for Nicholas to have a baseline EKG.

He schedules a cardiology nurse to come to our room. The ever-patient Nicholas endures yet another procedure.

Results of this test are normal.


Dr T prescribes 100 mg of Provigil, with an increase in 2 weeks to 200 mg. He spends a great deal of time in our room answering my questions about sleep issues, vitamin use and his thoughts about Nick's recent swollen lymph node issues.

Once again, I am reminded of how special he is to us.

We are finally released from the hospital. We are all hungry and tired.

Although we are concerned about Nick's new EEG issues, we are thankful that we have the luxury of going home. I think about the mother and her daughter and the room with the security guards.

On the car ride home, Pete grabs my hand.

"It's really important to have spiritual armor when you visit the Neurology floor at Children's, isn't it?"

"Yeah. but there never seems like there's enough to cover the spot right here," I say and point to my heart.

"I'm proud of you," he says and squeezes my hand.