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.

Tuesday, November 6, 2012


I am tired and overwhelmed, feeling like my family has just somehow survived a war. Perhaps, in a way, we have.

Nick ready to leave
It is 1:30 pm on a cold and sunny afternoon as we head into Boston for Nick's MRI.

"Hey," Pete says, "Do you realize, this is exactly where we were last week at this time?"

Thoughts of Sandy's fury, Nick's high fever, fallen billboards and treacherous driving conditions spring to mind.

"Hey yeah, you're right," I said.

Today, however, looks much different. The fall temperature outside is cool and crisp, making the sunlight seem brighter. Plenty of cars and trucks surround us on this trip as they too make their stressful journey into the city.

Weston and Nicholas are unusually quiet in the back seat. My thoughts begin to wander. I worry about Nick's MRI. Will the hospital staff accommodate his quirky behaviors? How is he going to react? What news will this test bring us? A sadness begins to build in my heart.

Ironically, a song begins to play on the radio....

The woman singing sounds weary and tired.

"And breathe, just breathe......" she sings.

In previous posts, I explain, how waiting feels alot like suffocating to me.

Now, on the radio, a woman is singing about breathing.

I think of my father and I am certain that he is speaking to me.

As tears fall from my eyes, Pete looks at me and smiles.

"Breathe........just breathe.....!!" he says emphatically, and we both start laughing.

We arrive at the MRI department at 2:45, a half hour before we are scheduled for Nick's appointment. We received a call last week telling us to come early since the scan before Nick's was expected to be a quick one.

As we enter the waiting room, we are shocked to see that it is filled with people. The young man at the front desk explains that the staff is way behind schedule.

This is not good. Nicholas is starving and Weston's meds are starting to wear off. Pete and I try our best to accommodate one child who is hungry and another who is wiggling.

We cannot go to the cafeteria since Nicholas must fast for his sedation. We are stuck. I pull out my phone and scroll through our photos in an effort to distract the children.

At about 4 pm, a nurse finally calls for Nicholas. He and I follow her into an exam room.

"Hi, I'm Missy," she says, "We are still behind schedule, but I thought you would be happier waiting in an examination room."

She begins the information gathering process. I carefully review all of Nick's medicines with her. She leaves the room for a moment and brings in a hospital gown for Nicholas to wear.

"This may cause some grief," I explain quietly, "For some unknown reason he freaks out whenever he has to take off his pants."

"OK she says and leaves the room, probably to enlist the help of several of the floating nurses.

I slowly take off Nick's pants.

"You're not going to take my pants off right?" he asks me.

"Nicholas, I need to take your pants off quickly but I am going to put some very cool doctor pants on you so we can take your picture." I am not confident in my approach to calming him and he responds accordingly.

"NOOOOOOOOOOOOOOO!" he shouts and begins an hour long scream fest in the MRI prep area.

Nurses scurry in and out of our room bringing him balloons and videos. He is not comforted and continues crying and screaming. His body is shaking with frustration.

"I HATE YOU ALL!" he screams at the top of his lungs and I swear our nurse looks like she is about to cry.

Suddenly, a kind, gentle man in his 50's approaches Nicholas, in his hand is an iPhone.

"Look Nicholas, he says, "do you like animals?"

Instantly, Nicholas stops crying and looks at this kind man's photos.

"Here is a picture of a llama, his name is Brun,"

Nicholas looks curiously at the photo.

"Do you like rabbits?" the nice man asks again. I have some pictures of rabbits too.

I do not know if this man is a doctor, a nurse or an anesthesiologist but I am thankful to the hospital gods for his ability to comfort Nicholas with just a cell phone.

"I have five children," he tells me with a wink, and I immediately understand his unique ability to calm an hysterical boy.

For over an hour, Nicholas bounces between bloodcurdling screaming and absolute silence as the patient man runs through his entire repertoire of photos. I ask our nurse if it would be OK for Weston and my husband to join us in our misery. I explain to the attentive nurse, how Weston is brilliant at calming his younger brother.

The nurse quickly disappears. It isn't long before I hear Weston's reaching out to his suffering sibling.

"Hey buddy, are you OK?" he asks as he hops up on the hospital bed. The red-faced Nicholas immediately stops crying and hugs his older brother. I look at Pete.

"Oh man, you would not believe......." I start to explain.

"I heard him," he says.

Nicholas is tired from his rampage. I hop on the bed next to him too. He lays his head on my chest and I start to sing a song. The nurse explains that today is a comedy of errors for the MRI lab and she apologizes for the delay.

Next, the IV nurse enters the room to insert Nick's catheter.

"He is a difficult stick," I warn. "His veins tend to roll and he is very dehydrated."

She uses a handheld infrared device to locate a vein on his hand.

"That's cool," I said as I had never seen this kind of a device before.

Next, they use a syringe without a needle and infuse a blast of numbing agent under Nick's skin. The nurse explains that this is a new procedure that they use for inserting IV's into children. It's called a J-tube.

Nicholas is definitely not impressed and begins to scream again.

The j-tube did the trick however and there is no pain to Nicholas as the nurse inserts the IV needle into Nick's hand. She sticks him several times before she finds a vein.

"You were right," she said to me. "His veins do roll."

"Yeah we've done this more times than I would like to remember," I explain.

The nurse bandages Nick's hand quickly and covers it with a towel to hide it from sight. Weston does his best to distract the distraught Nicholas. Leave it to the gadget-savy Weston, who finds a portable dvd player and begins watching, Finding Nemo, one of Nick's favorite movies. Pretty soon, Weston, Pete and Nicholas are performing their usual routine of reciting lines from the movie and giggling.

Nicholas clams down once again and we continue to wait. The entire lab has started to clear, as patient after patient is wheeled into the camera room. The hustle and bustle of scurrying nurses and technicians has stopped. It is finally quiet.

It is now 6 pm.

A friendly anesthesiologist enters the room and discusses Nick's sedation plan with me. He is kind and funny. He explains that he will be using an anti-anxiety med and a strong sedative called Propofol. I gasp.

"I know, I know," the anesthesiologist says, "poor Propofol has a bad rap thanks to Michael Jackson." He explained to me how he believed it would be a medication that would be less apt to cause Nicholas any residual ill feelings or combativeness, creating a deeper, more restful sleep. I explained that I was concerned about Nicholas's potential for repressed breathing. He told me he understood and would watch Nicholas carefully.

It was finally time for Nicholas to begin his MRI. We said goodbye to Daddy and Weston. I accompany Nicholas to the MRI scanning machine. He sits on the table and immediately the anesthesiologist begins to administer the milky drug into his IV. Within seconds, Nicky wobbles with sleepiness.

"OK, Mom," the nurses said, "it is time to go."

As I turn to leave the room, the anesthesiologist puts Nick's infusion pump directly beside me and I smack right into it as I try to leave the room.

"Don't worry, he said, any injuries that occur in the MRI room qualify for a free MRI."

We all laugh and I leave the room to search for the remaining members of my family.

I find Weston and Pete giggling with boredom in the waiting room. We grab all of Nick's gear, my gear and all of our coats and head to the hospital cafeteria. It is 7 pm and we are all out-of-our minds hungry. I feel sad as I remind myself that this is the pain Nicholas feels every day.

In the hospital cafe, we load our trays with piles of sandwiches, fruit, drinks, and ice cream. We spend almost $40 in mediocre food but it tastes like a gourmet meal to us. Weston is over tired and in true ADD form cannot stop talking. My mind is filled with sadness, fear and an incredible sense of physical and emotional fatigue.

We finish our meal quickly and head back to the now empty waiting room. We are all overtired. At 8:30 pm the nurse finally arrives and I am guided to the recovery room. Little Nicholas is drifting in and out of consciousness. The nurse explains that the quicker I can wake him, the quicker we can go home. I do not have to be told twice and tell her to instruct my husband to bring the car to the front of the hospital. I slowly feed Nicholas some apple juice and goldfish. I change my sleepy child into his street clothes and find the nearest wheelchair. He is shivering and sleepy but I work my magic to try and prepare him for our drive home.

I say goodbye to the few remaining nurses in the MRI lab and quickly wheel Nicholas toward the elevator. We head to the lobby and out the front door of the hospital into the freezing cold air where Pete and Weston are waiting in the car. Pete carries the wobbly Nicholas into the car and I hop into the passenger seat. Pete hits the gas and high tails it home. It is now 9 pm.

I close my eyes for much of the ride home as the impatient Pete is done with the hospital scene and anxious to get home. I do my best to keep quiet but it is difficult since my husband is driving like a madman just to get home. Miraculously, we arrive home safely. Pete and I coordinate the food, bath and medication schedule for both the children and animals.

Since Nicholas was on such a strong sedative, the MRI nurse suggested we keep an eye on him over night. Nicholas climbs into bed with me while Pete carries his pillow off to sleep with Weston.

Nicholas sleeps more soundly than he has in years. I awake throughout the night to listen to his breathing. Several times, he is sleeping so soundly there seems to be no sound at all and my heart stops for just a second.

This morning Nicholas awakes with a big smile on his face, yesterday's events completely forgotten. He is rested and happy. I admire my son's resilience.

I am not so happy. For once again, I must begin the difficult task of waiting.

I do not know when the ENT will call me with results.

8th floor Children's Hospital parking garage