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.




Monday, August 12, 2013

The Poop on Weston's Colonoscopy

Pardon the pun.....I just couldn't resist.

It was a long and tiring day for the entire family, but we are finally getting closer to understanding what's going on with Weston's plumbing.

After a day and night of fasting and drinking nothing but Miralax-laced lemonade, the hungry and irritable Weston awoke, eager to get to Boston and complete his tests. He told us that he dreamed of nothing but cheeseburgers and pizza. He suggested we stop at the cafeteria after his colonoscopy so he could feast to his heart's content.

Who were we to argue with such a hungry and brave young man?

"Mom," he tells me. "Now I know what Nicholas feels like. I cannot believe he feels hungry like this all the time."

The drive into Boston was unusually calm despite the summer rush hour traffic and I thanked the highway God's for our good fortune.

We arrived at our usual spot on top of the Children's garage.

 
Weston was not his usual cooperative self
I tried (unsuccessfully) to sneak this photo
You can see he is not amused
 
  "Dad, we need to stop for cheeseburgers and pizza before we go home!"
 
Nicholas, very happy that he is not the patient.
He is eager to play his new role as supportive sibling.
 
The early morning empty streets at the entrance to Children's
 
We arrive at the waiting room. where my children behave like professional patients
They have become quite skilled at "self entertainment"
finding no shortage of gadgetry and gift shop goodies.
 
Nicholas with his "bag of tricks"
His own handy supply of entertainment accoutrements
 
It isn't too long before we are escorted into the pre-op room.
Weston changes into his johnny and takes the unfamiliar position of reluctant patient.
 
 
This was the last of his smiles however, as the pre-op nurses had trouble finding his veins and obtaining an iv access. They tried both arms with no success and after nearly pin cushioning poor Weston to death, they finally acquiesced to the "big gun" anesthesiologist who, I swear, found Weston's vein by mental telepathy. He truly possessed an almost magical power. There are a few medical professionals in our lives who seem to posses his similar calm demeanor and accompanying healer magic.

Nicholas did his best to soothe his brother.
He used the portable DVD technique he learned from Weston.
And the tolerant twosome watched Monster's Inc while they waited for the GI doc.
 
She came soon enough to review the endoscopy/ colonoscopy procedure and answer any last minute questions.
 
After her visit, it was off to the operating room where Pete also took an unfamiliar role and accompanied his eldest son into the room. Within seconds, it was lights out for Weston.
 
Nicholas, Pete and I were starving since we tried to assist Weston in his quest to fast for 24 hours.We headed immediately to the cafe were we spent an obscene amount of money on lunch.
 
Pete grabbed his favorite chocolate chip cookie at Au Bon Pain and we headed back to the waiting room to wait for Weston.
 
I assumed the role of "keeper of the stuff"
 
It wasn't long before the doctor came out to speak with us.
 
She explained that there were no lesions inside Weston's intestines, potentially ruling out Crohn's disease. There was a small red spot inside Weston's stomach, so she took a small tissue sample for biopsy. She does not believe it is cancerous. She explained that there looked like there may be some swelling in his upper intestines and he may require an x-ray (with barium swallow) to observe this intestinal sensitivity further. This could indicate Irritable Bowel Syndrome or IBS. She explained that she could prescribe a medication if the tests come back positive. She also noticed that Weston's intestines seemed to be moving very quickly. This increase in motility can also cause chronic diarrhea. This is also a treatable condition.There are several medications that can be prescribed to slow down the increased movement of his gut.
 
Results of the testing would not be complete for another 2 weeks.
 
We headed back into the post-op room to visit our recovering patient.
 
 
He was groggy, gaseous and disoriented. For some unusual reason, he kept trying to get out of bed. I had to stand on one side of the bed while Pete stood on the other. When he bolted upright in bed, we gently eased him back into the prone position.  Pete placed two pillows on either side of his bed and explained that for folks with the wiggles, anesthesia can cause the body to forget where it is in space. A reference or support is needed to ground the body. (I know, I was impressed with Pete's understanding too) Pete puts two pillows on either side of Weston and sure enough it helps. The trusty Nicholas sits by his brother's side for additional support.
 
The nurse tells us that Weston must be at home before he eats for safety reasons. Thankfully, Weston is too woozy to argue.
 
Pete helps the wobbly wiggler into his clothes and we set off for home before Weston realizes how hungry he is.
 
 But not before Nicholas asks if he can help wheel Weston to the car.
Waiting here for Dad to pay his exorbitant parking fee.
Weston wonders where we can stop to eat?
 
I am pleased to see Nicholas step up to support his older brother.
 
I am surprised by the many role reversals we all experienced this day.
 
I am relieved that Crohn's disease is the least likely explanation for Weston's troubles but I am anxious to hear the definitive result.
 
Let's pray we do not have to put Weston (or the rest of us) through a barium swallow/x-ray and yet another visit to Children's!