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.




Saturday, March 16, 2013

Shakespeare and Children's Hospital

We have visited Children's so often in the last few months, it is beginning to feel like we are performers in a Shakespearean play.  The day is filled with suspense, sacrifice and tearful moments. Our visits to the hospital are like a rehearsal performance with each of us practicing and perfecting our particular parts.

Dad is the chaperone, carrier of all our stuff and keeper of the cash for food, parking and toy purchases.

I am the tour guide. I make sure we arrive on-time, communicate with all personnel who care for Nicholas and accompany him as he is transported from place to place.

Weston is the faithful companion providing support to Nicholas throughout his entire hospital stay.

And "Nicholas The Brave" is of course, our champion.

Our play begins on the eve of surgery. Mom and Dad are talking in the kitchen.

"So, did you hear from the hospital yet?" Pete asks anxiously.

"Yup, Nick's surgery is scheduled for noon tomorrow. But we need to arrive by 10:30." I answer.

"Oh man!" Pete exclaims. "OK, let's see, if I set my alarm for 2 am, I can give Nick his breakfast before we go."

Children diagnosed with PWS have an insatiable appetite. They live their lives in dire anticipation for their next meal, to deny them food could be considered cruel and unusual punishment. As a parent of a child diagnosed with this starvation syndrome, it is necessary to be unusually creative. By waking up early, we can provide Nicholas with his much-anticipated breakfast and distract him constantly throughout the morning until it is time to depart for the hospital. This distraction game will require all of our efforts.

We leave the house at 8:30am and bear the brunt of Boston's rush hour traffic.

We park in our usual place,

 
8th floor Children's Parking Garage (roof)
Weston gets nudgy looking over the edge.
 
 
It seemed fitting to take a family photo here...where we spend much of our time
 
 
Crossing the street toward Children's
 
 
The "rolling ball" exhibit in the lobby
Nicholas loves to watch it
 
 au bon pain
Today, we are careful to distract Nicholas as we pass by it
 
 "Mom, I'm hungry!" Nicholas cries. "Can we get something to eat now?"
 
"Yes, we can get something to eat here," I say, "Let's just check in first."
 
We quickly direct him to the elevators and ask him to push the "up" button.
 
Distraction, distraction, distraction.
 
We arrive at the Day Surgery Department where Nicholas seems to sense my anticipation, and begins to cry.
 
"I DON'T WANT TO HAVE AN IV!" he wails.
 
The receptionist quickly whisks us off to our own private room. I arranged this room before our arrival explaining to the nurses that Nicholas suffered from severe behavioral issues and it would most likely benefit all their patients if we were in a room with a door on it.
 
Thankfully, they listened and guide us to an empty room.
 
Nick is crying and explaining loudly to the staff that he does not want to take his pants off. Thankfully, I gave another heads up to the staff and our assigned nurse, Trisha, is prepared for this outburst. She explains calmly to Nicholas that he may keep his pants on.
 
Meltdown.....diffused!
 
 
unhappy camper
 
 Weston and Dad are finally allowed into the room and our angry little man is quieted.
 
good medicine
 
 
the comforter
 
 I slip into my usual role as communicator and speak with the oral surgeon. She explains to me that if Nick's back teeth are impacted, they will need to pull them. If so, Nicholas may need to spend the night in the hospital due to his blood clotting issues.
 
"What?" I ask in disbelief as this is the first I have heard of a possible overnight stay.
 
Uncharacteristically, I am not prepared for this possibility.
 
Nicholas is diagnosed with borderline vonWillebrand's disease. This is an inability of the blood to clot efficiently. Similar to hemophilia, but not as life threatening, since the blood will eventually clot. In procedures where there may be a lot of blood lost at once, this can be a serious condition. Nicholas would require blood clotting medication and overnight observation.
 
I do not know why I didn't think of this. I have neglected to bring our emergency overnight bag. The thought of another night's sleep in the parent-eating beds at Children's has paralysed me. 
 
Dr. Yi, our young dentist, is standing beside the oral surgeon and senses my fear.
 
"'We will need to take ex rays first, to take a good look at these teeth. There is a good chance we will not need to remove them."
 
He has calmed my fear and will probably never know how much his kind words have meant to me.
 
Nicholas and I are finally transported to the surgery area. The nurses place a mask over his face and he begins to scream....bloody murder. Fortunately, the deep breaths from screaming force large gulps of gas into his lungs and he quickly falls asleep. I am escorted back to the waiting room where Weston and Pete are withering from a lack of food.
 
We head immediately to the cafeteria where we spend an obscene amount of money on a few sandwiches and drinks.
 
Next we head to the lobby where Pete purchases two of his favorite oatmeal cookies while Weston pleads for a toy vehicle from CVS.
 
 
Pete performing his duties of carrier of the stuff and keeper of the cash
Many a patient got a good chuckle from watching the big man carry a pink  Dora backpack
 
 We head back to the waiting area. As we look out the window, Pete says,
 
"Hey Lis, take a look at this. That's the unit I worked on at Dana Farber."
 
For those of you not familiar with the Boston area, Dana Farber Cancer Institute is a world leader in adult and pediatric cancer treatment and research. It is located next to Children's.
 
 
The "unit" he speaks of is on the Dana Farber building on the right
It is underneath the giant silver pipe that makes a 45 degree turn to the right
Hubby is an HVAC mechanic and spends much of his time on Boston rooftops
  
Time seems to move more slowly as we continue to wait. Pete places our stuff on a chair.
 
 
Weston and Pete get silly while I pray that Nicholas and I do not need to spend the night. I begin to feel frightened and sad. I miss Nicholas and wish I could be by his side. 
 
 
Finally, Dr Yi arrives in the waiting room and tells us that all went well. Nick's back teeth were not impacted and we do not need to stay.
 
Whew!
 
We head to recovery where the sleepy Nicholas is starting to wake.
 
"Muummy, I'm hungry," he cries as he first begins to open his eyes.
 
Mary, our delightful Recovery Nurse, gives Nicholas some Italian ice. The cold ice soothes his sore throat and washes the blood from his teeth.
 
He is uncomfortable but we dress him quickly and place him in a wheel chair so we can transport him to our car. Weston asks if he can wheel his brother.
 
But before we exit the hospital, we make the important first stop in the lobby where Nicholas can watch the rolling balls and he can finally eat.
 
 
 It is a long exhausting day, but it is finally over. We are all anxious for a reprieve from this hectic pace. We are ready to put our hospital performances on hold for awhile and seek some relaxation time before our "personal play" is ready to begin again.