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, October 5, 2013

14 Cavities, an Albanian Nurse and our Trip to the Franciscan Hosptial for Children

As you all know, Nick receives much of his care at Children's Hospital in Boston.

We spend alot of time there.

Yesterday however, Nick's latest hospital adventure occurred at the Franciscan Hospital for Children, located in the metro Boston area.

This hospital has a rather unique history.

The info below is from their website:  (to visit, click here)

"In 1939, Father Richard J. Cushing became Auxiliary Bishop of Boston. One of his strongest visions was to build a hospital for physically disabled children regardless of race, religion, or ability to pay.
He soon joined forces with the Franciscan Missionaries of Mary, an international order of Sisters dedicated to helping people in need.
Next, the Cardinal approached his friend, Ambassador Joseph P. Kennedy, to finance the project. He and his wife, Rose, heard the Cardinal’s plea and made an incredible $600,000 donation to fund the new Hospital.
With the help of many benefactors and friends, the Cardinal’s dream was realized and a new venture to provide the highest quality of care to children with special needs was launched. The Hospital was named the Joseph P. Kennedy, Jr. Memorial Hospital, in honor of Joe Kennedy Jr., who was killed in action during World War II. The Hospital was opened on September 8, 1949 with more than 4,000 visitors joining in the celebration!"
I was particularly interested in this photo:
That's a young John F. Kennedy with his mother, Rose
presenting a check for $600,000 to Cardinal Cushing for construction of the hospital 
It is interesting to me how the visions and contributions of a few fellow human beings from long ago can continue to benefit the children of today. Imagine if we all left such a legacy?

The Peters' adventure began with hubby waking Nicholas at 2 am.

Since Pete is typically up before dawn to give Nick his breakfast, our PWS child does not notice the time difference. Our little ruse works. The child with the insatiable appetite does not feel deprived of food. We thank our lucky stars that we are able to avoid an all-out war and intense behavioral meltdown so early in the morning.

Weston, Nick's usual right-hand-man, has decided to miss today's journey. He opted instead, to go to school. His work load has increased now that he is in high school. One absent day can result in many hours of catch-up work. This is not something well-tolerated by a boy with the wiggles.

Weston's supportive and cheery persona is painfully missed as we begin our combative ride into Boston. Rush hour traffic seems particularly truculent, but we arrive safely to the hospital none-the-less.

We are checked in at the front desk and lead to the pre op room where Nicholas immediately announces to his kind-hearted nurse:

"I am not taking my clothes off!"

You may remember this unusual aversion from our last visit visit to Children's.

The nursing staff at this hospital is well trained to handle behavioral issues stemming from disability. So the lovely nurse calmly explains to Nicholas,

"You do not have to take your clothes off sweetheart. Please don't worry your heart."

This simple loving statement reassures the nervous Nick.

The Anesthesiologist arrives at our bedside. I explain Nick's unusual aversion to gaseous sedation which also seems to initiate a combative arousal in him. Once again, the staff is incredibly accommodating and she agrees without hesitation to start an IV instead.

Nicholas is now very nervous and starts to cry.

So I begin to sing.

"On top of spaghetti, all covered with cheese, I lost my poor meatball when somebody sneezed..."

Nicholas stops crying and starts to sing with me.

"It rolls off the table, and on to the floor......."

The anesthesiologist seizes this "calmed child" opportunity. She applies a numbing medication on Nick's hand and wrist to ease the pain of any additional "sticks" to his arm. Children diagnosed with PWS have very low muscle tone. This makes their veins susceptible to  rolling when a needle is inserted. It is not unusual for some of the most adept medical professionals to have trouble accessing Nick's blood. It is an understatement to say that Nicholas does not enjoy this experience.

I continue to sing to Nicholas.

"....and then my poor meatball rolled out of the door."

The adept anesthesiologist now quickly inserts the IV. She locates his vein on the first attempt.


Nicholas begins to settle down as we wait for his surgery.

The OR nurses are bustling around the room and I smile as I hear a few of them humming our spaghetti song.

Hm...hm...hm...hm...... hmmmmmmmm, hm.......hm...hm...hm...hm...hm

Nick's nurse Janice seems to have a sixth sense into the workings of his soul. Unknowingly, she brings him his most powerful calming icon and places it on his IV.

It is a Dora sticker.

The lovely cartoon caricature performs her magic and Nicholas starts to smile.

The OR staff quickly surround the happy child and insert a sedative into his IV, within seconds, he is out like a light.

Pete and I head immediately to the cafe for something to eat.

After filling our bellies with trays full of food items we do not typically eat around Nicholas, we walk back to the waiting area.

There are several families waiting there. One by one each family is called into the post op room to reconnect with their loved ones.

Pete and I are now all alone as we hold hands and sit silently together. The blue glow and quiet murmur of the flat screen TV become like background music to our worried thoughts.

I look at my husband and feel thankful for his strong, quiet presence. His face looks older to me as he struggles to processes his own nervous emotion. His stoic and introverted response to stress hides the true intensity of his vulnerability. I often forget that he too is struggling to accept our difficult life.

We do not have the support of a strong family. During times like these we feel the sting of this missing comfort.

We wait in the small room for hours.

 Dr Lindi finally arrives."Everything went well," she says. Pete and I release our torturous concern in a long synchronized exhalation of breath.

"He had 14 cavities," she says, "We took a lot of x-rays and put an extra sealant on his teeth. I am giving you a prescription for a toothpaste with extra fluoride."

"Thank you Dr. Lindi" I said.

She continues, "Nicholas had a lot of tartar build up. We need to be extra vigilant with his dental care. She suggested he visit with her every four months"

I laugh a little as I explain our overloaded schedule of specialist visits.

"I know your lives are difficult. You are doing the best you can. We really enjoy treating Nicholas. We will get through this together."

I told her I was glad to have her on our team and was anxious to get Nicholas back on the dental hygiene highway. "You know, that's one thing about Nicholas, he has brought many beloved professionals into our life who have provided much compassionate care to our entire family." I say

"I am in it for the long haul," she replies. "Thank you for your patience and for waiting so long."

"No problem," says Pete "We are used to the drill,"

Dr Lindi guides us to the post op room where six nurses surround the bed of our crying boy.

"Where's my pants?" Nicholas wails.

The staff explain to me and Pete that they had to pull down his pants so he could pee during the long procedure.

"Your pants are right here," I say to my troubled son, "We just have to pull them up over your bootha."

"Bootha" is an Albanian word for bum. Did I mention I was half Albanian?

Janice, the kind hearted nurse says "Did you just say bootha?"

Yes," I say, and begin my well-versed explanation of this unusual word.

"I know exactly what it means!" she answers excitedly, "I am Albanian too."

I am shocked but pleasantly surprised since I have only met one or two Albanian/American families in my entire life.

"That explains it. Now I know why I like you so much." I tell her. We laugh about how the only words that third generation children from Albanian settlers seem to know are either swear words or inappropriate body parts.

Nicholas begins to settle down from his emotional state and Janice hands him a Popsicle.

She reviews Dr Lindi's care instructions. She helps place Nicholas in a wheelchair. She insists on accompanying us to our car. She pushes Nick's wheelchair through the hospital hallways toward the front door. Her helpful energy reminds me of Weston and his steadfast devotion to his brother.

It has started to rain. Pete tells us to wait by the door as he runs through the downpour to get to the car. He drives up to the hospital entrance. Janice continues to push Nicholas through the pouring rain. She is soaked to the skin and yet continues to talk softly and slowly to Nicholas, helping him into his seat.

I am sad as I say goodbye to this kind-hearted Albanian woman. I give her a hug.

As we leave the hospital, I realize that although I have never met this woman, she feels alot like a family member to me.

I wonder if perhaps this is no accident?

**a sidenote**
I tried to take a photo of Pete
As usual, he was acting silly
He threw one of the hospital hair nets at my camera
This is the resulting photo
I thought this was an excellent metaphor for the emotion he hides
as a parent of a child diagnosed with special needs
He is hard to see