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.




Thursday, June 21, 2012

The Trip to Children's Hospital Part II

If you have not read Part I, click here to read:


I was wheeled from the OR into the hallway where the frantic hospital staff finally removed the discharged family from the only available room left on the maternity floor.

Nicholas was taken to the ultra sound room.

Pete left my side briefly to inform my family that Nicholas had been born. He moved slowly and on his face was a look of terrible sadness.

I was just settling into my room as the same pediatrician came in to announce the results of Nick's testing.

"We do not see any female reproductive organs in your baby, at least for now," said the doctor.

"What do you mean "for now"? I snapped.

"Well they may be too far up in his abdomen for us to see." she replied. She seemed to be relishing in the delivery of this dreadful news.

"And what about testes? I asked. "Does he have two of those?"

"Yes," she answered. I am now certain this woman is evil.

I was sedated and drifting in and out of consciousness. My family arrived to cheer me but I could see from their faces that they were hiding their fears behind false smiles.

Since I was too sedated to speak, they leave. Pete and I are left alone in my room.

Nicholas is finally brought in for us to hold. Pete holds him tightly. Once again I begin to cry.

"Why are you crying?" Pete asked.

"I'm afraid he's going to die." I answered.

I must have drifted out of consciousness because I don't remember anything more.

The next morning was Saturday. We were surrounded by fresh new staff faces and for that I was thankful.

I learn that Nicholas has been admitted into the  NICU, a new department that was recently funded by hospital proceeds and now wholly supervised by last night's callous pediatrician. Her sinister motivations are now starting to become more obvious to me.

I rise out of bed. I am determined to see my son. My head has cleared from the sedation. The stitches in my abdomen burn like fire as I slowly make my way down the corridor to the NICU to see my precious child.

Once inside, I am finally able to hold my son. I notice that his body is very floppy. I feel like I am holding a rag doll. His head has trouble staying erect. He is barely able to suck and when he does he tires easily. He takes only a few cc's from the tiny preemie bottle. Instantly, I know, there is something wrong. But my mind refuses to believe this horrific reality and I wonder if perhaps he needs just a few days to gain some strength.

Over the weekend, Nick is seen by a orthopedist who comes to evaluate Nick's overall weakness and splayed hips. He tells me he believes Nick has hip dysplasia. He tells me this is a common condition for some new-born babies and explains that we should use three diapers when we dress him to help align his hips into their correct position. He tells  us that he does not believe that Nicholas has Prader Willi Syndrome.

This is the very first time I hear the words Prader Willi Syndrome.

"Prader what?" I ask

"Prader Willi," he answers but tells me not to worry. I am afraid to ask him anything more. I am not ready to hear anything related to the word "syndrome"

Pete and I use the rest of the weekend to recover my strength and formulate a plan for Nicholas. He is still very weak and not sucking appropriately. He takes only a few cc's at a time. The nurses indicate that he will most likely need to remain in the hospital after I am discharged.

No way! I think to myselfI am not leaving my son under the care of the psycho physician. Pete and I agree he needs to be transferred to Boston.

Monday morning arrives and "pediatrician dearest" is back from her weekend away. She enters our room to discuss her plans for Nicholas.

I interrupt her monologue to tell her we have decided to transfer Nicholas to Children's Hospital in Boston.

"If he is transferred to Boston he will NOT receive the level of care I can provide here." she tells us defiantly.

"What?" I ask in disbelief?

"Are you telling me you think you can compete with the likes of Children's Hospital? I ask her, incredulous at her arrogance. "You are a small local hospital and do not have nearly the number of trained physicians and specialists that are available to us in Boston." I reply.

"I was trained in Boston," she says.

"I notice you don't work there any more," I answered.

"Your decision not to recommend Nicholas for transfer to Boston is medically, and I would argue ethically, irresponsible."

She is silent and stares at me smiling. She seems to be enjoying our exchange.

Pete, now rises from his chair.

"That is all," he tells her, "We are leaving."

She is emotionless, her face blank and vacant. She tells me she will need a great deal of time to prepare Nicholas for the transport to Boston. She turns and leaves the room.

I am now certain that we have made the right decision for our child. I change into my clothes completely oblivious to the pain of my recent surgery.

Pete and I wait for the ambulance to arrive.

It isn't long before a tall dark haired man dressed as an EMT arrives in our room. He is pleasant and accompanied by a group of young technicians.

"Where is the little guy?" he asks me. I tell him we are waiting for the doctor to "prepare" him.

He waits with us inside our room and I am thankful for his cheery disposition.

My mind is racing. I cannot turn it off. What on earth is wrong with my son? Am a ready to handle all this? How will I be treated at Children's? Did I make the right decision?

The handsome EMT seems to hear my racing thoughts,

"Don't worry," he said, "You are doing the right thing." I am thankful for his words but still feel terribly numb.

Pete turns to me and says,

"You go ahead in the ambulance with Nicholas. I will follow behind in the car."

"OK," I said, but for some reason I feel like I am under water, words sound muffled and I cannot respond.

Finally, after 45 minutes, Nicholas is wheeled out of the NICU in a giant incubator. The kind hearted EMT's take over and I am instantly relieved.

We head out to the ambulance. There is no room in the back so I must sit up front.

The handsome EMT sits in the back with Nicholas and gives me pleasant updates along the way.

"He's doing fine," he says with a smile, 'I think he is enjoying the ride."

I am thankful for his good spirit but I am uncharacteristically unable to respond.

Now, I have never visited Children's Hospital before but for some unknown reason, I seem to know the way to the facility. Take a right here, I think to myself and the ambulance slows to make the turn. Left at the lights, I think again and the compliant vehicle follows along. I do not understand this newly acquired sixth sense but I remember being very thankful for the preoccupation.

As I sit silent and numb in the front seat of the ambulance.

I am sad and wonder what life will be like for Nicholas?



Up next,
Part III Life at Children's Hospital