Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, 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, October 30, 2012

Over Charles River, and through the Hurricane, to Children's Hospital we go...

Hurricane Sandy arrived in our area as expected. 

NASA photo via Getty Images
Of course true to the Peter's family tradition of unbelievably stressful special needs living, we found ourselves journeying into Boston at the height of the oncoming monsoon.

For us, this is a perfect metaphor.

Nicholas has been recovering from strep throat and an infected swollen gland. Last week, he finished up his antibiotic medication. On Sunday, the day before the storm, he started to complain of a sore throat. He did not have a fever. But like many children diagnosed with PWS, Nicholas does not always present with a fever in response to infection. I decided that I would take him back to our pediatrician as soon as it was safe to do so.

As the storm approached on Monday, Nicholas was quiet and subdued. He took short little naps throughout the day but did not exhibit any alarming symptoms of distress. By afternoon, the storm began to unleash its fury, with bands of high winds and heavy rains starting to batter our home.

At 1:30 pm I headed into the kitchen with Nicholas. Under the large overhead kitchen light I could clearly see Nick's face. I gasped at what I saw. His right cheek, forehead and chin were covered with a large, hot, raised, red rash. The left side of his neck had begun to swell again. I touched his head. He was very hot. I knew he was in trouble.

I called my husband Pete to come and take a look. I told him to get ready, it looked like we needed to take Nicholas to the hospital.

"Call the doctor," Pete said.

I quickly picked up the phone and called  Dr Bhathena. Thankfully, she was in the office. As I explained Nicholas's condition to her, she told me she hated to do this to us, but we needed to transport Nicholas to Children's Hospital immediately.

"I will let them know you are coming," she said.

I flew into action.

I ran upstairs and grabbed my husband's duffel bag filling it with Nick's clothes, my clothes and a handful of toiletries in case we need to spend the night in the hospital.

The thoughtful Weston, collected Nicholas's Dora pillow, his Dreamlite and Spike, Nick's favorite friend.

Pete threw all of our supplies into the truck, including medications for both boys, and it was off to Boston we headed, hurricane or no hurricane, it didn't matter, Nicholas needed to get to the hospital.

It was 2 pm and we were headed directly into the oncoming tempest.

Bands of heavy rain pelted our vehicle throughout our drive to town. Heavy wind made it difficult for Pete to keep the truck in our lane. Several times a heavy blast would send us drifting across the road. Thankfully, there was very little traffic. Most residents heeded the dangerous weather warnings.

Pete was quiet as he concentrated solely on driving. We saw pockets of damage along our route. Every town we passed seemed to show signs of Sandy's fury. There were toppled traffic lights, downed branches and torn shingles that littered the road.

We carefully crossed the Tobin bridge and for the first time in our lives, we did not need to pay a toll. This of course, to keep cars from collecting on the dangerous wind-swept bridge during the storm. From the bridge we could see several large tanker ships bobbing in the bay like toy boats in a bath tub. But they were docked safely in the harbor and out of harm from the 30 foot seas.

We entered the city of Boston, and headed into Kenmore Square. On our right, police lights were flashing. The giant billboard that sits next to the famous Fenway Citgo sign had tumbled.  We were directed past some yellow tape where police had blocked off a section of the street for safety.

Pete continued driving us slowly toward Children's Hospital. He dropped Nick and me off at the ER and headed toward the parking garage with Weston.

A nurse met us at the ER door. She checked her list and saw that Dr Bhathena had prepped them for our arrival. We were checked-in quickly. Once again the storm had inhibited folks from travel and the ER was unusually quiet.

A resident quickly gathered our info, examined Nicholas and took a throat culture. After a while the Managing Resident Doctor arrived to tell us Nick's strep test came back negative. She was tempted not to give Nicholas any antibiotics since "there was nothing to treat."

I gasped and she immediately saw the horror in my face.

'Don't worry she said, I will check with your pediatrician. We are not going to do anything that makes you uncomfortable." and off she went to call Dr Bhathena.

"Phew," I said and breathed a little easier.

Dr Bhathena must have had the same reaction as I did because within minutes the Attending Physician came in to examine Nicholas. He was much like Dr Bhathena, thorough, intelligent, kind and providing us with all kinds of info as he examined Nicholas.

He diagnosed Nicholas with adenitis, an infection of the lymph node.

He explained that there could be two possible scenarios happening to Nicholas. The first, is that Nicholas has a lymph node that is prone to swelling during certain infections in which case there is no further treatment that is necessary.

The second possible scenario is that Nicholas may have a benign cyst in his lymph node. He explained that the cyst is only viewable when the lymph node is swollen. An infection can cause the cyst to become necrotic and antibiotics are needed, An ultrasound or CAT scan is usually performed when the gland is swollen to confirm diagnosis.

Under Dr B's direction, he suggested we try another antibiotic (clindamyacin) first to see if perhaps the infection responds better to a different "big gun" medication. Since the weather was so poor, he did not want us to remain in the hospital. He suggested we perform the tests at home when it was safe and convenient for us to do so. He gave us a prescription and suggested our pediatrician refer us to an ENT for further evaluation.

It is now 5 pm. Weston and Dad are bouncing off the walls in true ADHD fashion. Being confined in a small space for several long hours is not conducive to good behavior in either of them. I am thankful we are going home.

We need to pick-up Nick's prescription at a pharmacy first. With Hurricane Sandy raging, thankfully there is a CVS located in the lobby of Children's. It is open.

But of course, nothing is ever easy for us and the pharmacy must call the ER doc's several times since clindamyacin is a pill too big for Nick to swallow. It takes over an hour to sort it all out and decide upon a liquid version of the drug.

Pete takes both boys to Au Bon Pain for dinner since both children (and Pete) are now out of their minds with hunger. Thankfully, Au Bon Pain is directly beside CVS.

The boys eat as I pick up the prescription.

We are finally ready to head back outside and into the wrath of Sandy.

It is now 6:30 pm. The winds in Boston are whipping. It looks like a ghost town with no sight of any cars or pedestrians. It is an eerie sight. If you have ever visited Children's Hospital, you will know what I am talking about, even on Christmas day it is a very busy place.

Despite the difficult drive ahead of us, I am thankful Nicholas and I will not be staying in the hospital overnight. I feel as if we dodged a bullet. But as I run toward the parking garage in the stinging rain,  I can't help but feel like perhaps a second bullet has just been fired.

View of Children's Hospital from the parking garage
Strong winds shaking my camera
Notice the absence of any traffic or pedestrians
We begin our long drive home with stronger winds and heavier rains starting to fall. Pete maneuvers us carefully through the streets of Boston and onto Interstate 93. I an nervous and holding onto my door handle tightly. OK  I admit it, I am somewhat of a backseat driver, but tonight I try to keep my big mouth shut and allow my husband to drive in peace. With the over-tired Weston giggling and farting in the backseat, this is almost impossible. We come up quickly toward a traffic light and I firmly press my right foot to the nonexistent brake on the floor. The hyper-focused Pete stoically continues to ignore us all.

It is rush hour on a rainy, windy Monday evening and eerily... there is no traffic.

This is the view outside our front window in Boston.....no traffic.

On the highway...no traffic

No traffic, no cars, no lights, nothing. It is a very unfamiliar and somewhat creepy sight.
Thank goodness for my heroic husband Pete.
Later, we arrive home safely. All of us are exhausted. Thankfully, our lights are still glowing.Both boys bathe and head directly to bed.
Overnight, Sandy's winds increase again and begin to howl and roar, and once again in true Peter's family tradition of stressful living, it isn't long before both boys climb into our bed.
As I lie in bed listening to the gusty winds and the sound of Nicholas breathing, I try to quiet my mind by reflecting on the busy day's events.
Nicholas did not require hospitalization.
We safely made our way in and out of a treacherous journey to Boston.
We did not loose power.
No one was injured.
We received no property or household damage with the exception of a few shingles blown off from our garage roof.
We are safe, we are healthy.
And although our life is indeed chaotic and stressful, I still feel the need to thank God for our health and safety.
We are indeed a fortunate family despite our adventuresome lifestyle.
p.s. I am off to make an appointment for Nicholas with the ENT, will keep you posted.


Elizabeth said...

Good lord. I'm so grateful that you're all ok, and I admire your resilience, but, really? You just can't make that sh#$#$ up!

Luvmypeanut said...

Clindy has caused c diff for Alex so watch out! not that you all haven't braved enough! God bless!

The Henrys said...

OMG!! I can't believe this happened! I'm so glad that you are all okay and hopefully this antibiotic will work wonders for Nicholas. I hope you are all fully recovered from this and life can be calm for a while!

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