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.

Sunday, January 15, 2012

The House of Healing

Nicholas and I have returned from Children's Hospital where his latest EEG was performed. Or as Nick calls it the hos-i-pi-tal.

As usual, I have learned some important things.

Each new adventure with Nicholas, brings me one step closer to understanding his complex needs.

The lessons I learn from these adventures are never what I expect.

But it is with this new information, that I begin to understand what I must do next to help unravel this mystery that is my son.

We head to Children's on Friday afternoon.

After two days of rain and wind, the weather has finally started to clear. As we drive into Boston, we notice a beautiful sight in the sky. The sun's rays find an opening in the thick dark clouds and illuminate the city ahead of us. It is almost as if the brightness has found Children's Hospital, and is shedding some light on what we will find there.

This may sound corny to some of you, but to me it was an important validation from above. I knew somehow this vision had significance.

We survive the harrowing drive through Boston traffic and arrive at the parking garage. Nick's favorite place. We park in our usual spot on the roof.

Nicholas has brought two of his favorite backpacks stuffed with things for him to do during our stay.

We arrive at the admitting office, where a large fish tank is full of fish from the movie, Nemo. There is Marlin, Dory, Gill and Nemo, who all swim happily around the tank calming the anxious patients.

Nicholas finds his favorite toy and waits patiently with Weston and Daddy as I fill out the necessary paperwork.

It isn't long before we are told to head up to the Neurology floor on 9 North. As we arrive, we pass many patient rooms. Each room has a window facing the hallway. On each window is a painting from one of the previous children who inhabited the room. But as we pass these delightful pictures, we are struck by one window in particular...

"Did you see that?" Pete asks me.

"Yeah, I saw it." I answered.

"Another sign?" Pete asks.

"I dunno." I answer, as I am officially in Mummy mode. This is a state of mind I use to block all emotions and concentrate on the job at hand. It is going to be a long night and I need my inner strength.

We arrive at the nurses station where pretty Veronica greets us warmly.

"Hi, is this Nicholas?" she asks and extends her hand to greet the little man.

"Let me show you to your room," she says.

It is, of course, this one...

Pete and I look at each other and smile. We do not speak to each other but silently we know Pete's question has been answered.

We look around the room and see we have a lovely view of the tall building going up next door.

 And in the corner is my lovely bed for the evening, complete with two small plastic pillows.

Next, the lovely Lejo, our EEG technician arrives to prep Nicholas for his overnight study. She must apply several leads and wires to Nicholas's head using some tape.

"No air, right?" Nicholas asks as he is very disturbed by the "air tube" they use to dry the glue. This time however, we have cut his hair short so that the technicians can use tape instead of glue.

"No air!" we all answer in unison, hoping to calm Nicholas, who is starting to become visibly anxious.

"I don't want to put the buttons on!" Nick suddenly screams as he starts to unravel emotionally.

Weston, Daddy and I rush to his side, asking him questions and singing songs...anything to calm our nervous child.

Nicholas's face turns red from crying as Lejo finishes up applying the leads on one side of his head.

"Mummy, don't stop singing Pussycat!" Nicholas says while he continues to cry. Pussycat, also known as "What's New Pussycat?" is a 1960's tune sung by Tom Jones, and one of Nicholas's personal favorites. My singing voice is not exactly of high calibre but I sing the song none the less in an effort to calm Nicholas.

"What's new Pussycat, whooooooooooaaaa, What's new Pussycat whoooooooooooaaaa..." I begin. Weston and Daddy join in. Folks walking past our room must have laughed with amusement at the sight of the three of us singing to the screaming child laying on his bed.

"Pussycat, Pussycat I've got flowers and lots of hours to spend with youuuuu..."

"Come on Nicholas, join in, you know the words," I say and suddenly the crying stops as a sobbing voice starts to sing.

"Pussycat, Pussycat I love you, YES I DO!..." Nicholas starts to sing at the top of his lungs and Lejo the technician starts to smile as she watches the once sobbing boy now sing his little heart out.

She works quickly and it isn't long before she is done. She wraps his head like a turban and places a small backpack into a Children's Hospital bag. She tells Nicholas that he can have the bag when he leaves the hospital and he is immediately comforted.

Weston is anxious to help his younger brother and hands him his new turtle pillow pal. My good friend S gave this fluffy friend to Nicholas especially for his hospital visit. (Thank you my dear friend)

It is now about 4 pm. Nicholas is hooked up to his monitor and our EEG study begins. 

Weston and Pete head home to beat the rush hour traffic. I order supper for Nicholas. About an hour later his meal is delivered and Nicholas feels like a King. He loves having his food delivered and eating it on a tray. He is happy. The events from earlier this afternoon are forgotten as my son teaches me the meaning of the word, resilient.

As a special treat, we order some vanilla ice cream. He takes his time, savoring every mouthful of the sweet sticky dessert. He is content.

After dinner we play some games and color. We meet Katie our night time nurse. She looks closely at us and says,

"Hey wait a minute, I remember you guys. You have been here before, haven't you?"

I don't know if it is a good thing or a bad thing that we are becoming familiar to the Neurology nurses. She does look familiar to me as well, and I ask her,

"Weren't you recently engaged?"

"Yup, that's me," she says "Only it was about a year and a half ago!"

"You have a good memory," I tell her.

"No," she says, "who could forget Nicholas?"

Before we know it, it is time for bed. Nicholas is exhausted from his busy day. We put on his pj's and he quickly drifts off to sleep.

The physicians at Children's Hospital make their rounds at about 8 pm in the evening. Children's is a teaching hospital and is affiliated with Harvard Medical School. A large group of eager fellows and residents accompany the head Neurologist, Dr. Harini on her visit with each patient.

They are a diverse group of individuals and I am thankful to have the extra brainpower evaluating my son.

I explain to the intelligent group that we are concerned about recent results from Nicholas's Neuropsych evaluation. It seems to indicate that there is some regression in Nicholas's cognitive scores. The school has also informed us of some skill sets that Nicholas has lost. We have noticed some deterioration in his speech and academic progress. I told them that I was hoping that perhaps Nick's EEG may show some increases in his overnight sub clinical brain activity. Perhaps there is some spiking in the areas of his brain that correlate to where we have seen regression.

Our loud discussions have now unfortunately awoken poor Nicholas. The attending physician examines Nicholas, they ask a few polite questions and tell me they will visit with me tomorrow morning to review the results.

Another EEG technician comes in to attach a few more leads before Nicholas drifts off for the night. The leads are on his face. They also attach a pulse ox to his finger to measure some of his vitals while he sleeps. The device glows red on Nicholas's finger and he becomes very distracted by it. He kind of reminds me of the movie, ET.

see the red light on his finger? "ouuuch!"

Nicholas is now alert and restless. He cannot sleep. Our rather good start to our hospital stay has taken a nasty turn. He absolutely will not go to sleep unless I go to bed too. With no other option to calm him, I pull out my bed and gasp, as my new mattress for the evening looks like this....

It is about 2 feet wide and 4 feet long. I am thankful that Pete did not stay the night with Nicholas since he would not fit on this "strip of paper" of a bed.

Nicholas tosses and turns but eventually falls asleep until about 2 in the morning when the custodial staff decided to wax the hallways of the entire 9th floor. The vibrating machine bumped our door and poor Nicholas awoke, frightened by the loud sound. I must admit, I was wondering whose genius idea it was to wax the floor of the sleep lab at night? I resist an urge to assail the poor fellow just doing his job.

Nicholas starts to cry and becomes inconsolable. He hates the light on his finger. His head itches and he misses his bed. I climb into bed with him but it doesn't help. He finally just cries himself to sleep. I head back to my bed and eventually drift off too, struggling not to move least I fall off of my wooden plank.

Nicholas wakes me up at 6 am hungry for breakfast. It is clear that he has been awake for a while and has removed the red light off of his finger.  I wash and dress anxious for 6:30 to arrive when I can finally order breakfast for Nicholas. Note to myself...bring extra food next time!

Nicholas and I while away the hours waiting for the medical team to review our results. Weston and Pete arrive to spend the morning waiting with us.

Nicholas entertains himself by visiting his "office" also known as the "Krusty Krab" for any of you SpongeBob fans out there. It is the closet in his room. He passes the time by climbing in and out of the narrow space.

He explores the buttons that move his bed...

He has no trouble entertaining himself. Weston and Pete do not share this skill.

The medical team finally arrives to speak with us. Dr Harini explains that there were no spikes noted in Nicholas's overnight EEG. None!

Now I should be happy with these results, right? Nicholas's ESES is being managed effectively by his medication, and the spikes are starting to resolve as the doctors said they would. But instead, I am confused. Why then are we seeing regression? What is the cause of Nicholas's increase in stuttering? Why the academic loss? 

I engage in a long conversation with the head Neurologist as well as with our good friend, Dr Takeoka who stopped by to visit with us last night after a busy day's work. Both Neurologists provide me with their thoughts.

I am astonished at their level of knowledge and the hypothesis they share with me. The strength of their ideas match the strength of their compassion and I feel blessed to live near this hospital. It is truly a House of Healing.

I will share their information with you in my next post since this one has become too long.

We are finally done with our study. The technician comes in to remove Nick's leads. Noelle, the nurse, brings us our discharge paper and we are ready to head home.

Nicholas and I are both exhausted from our restless night.

On the way out of the hospital, Nick notices the gift shop where a large group of balloons are swaying.

"Mom, can I get a balloon?" Nicholas asks.

"Yes, Nicholas," I answer, "you were very brave and I am very proud of you."

"You are?" he asks.

And in the bundle of bouncing balloons, is of course, his favorite.

As we head home from our adventure, Nicholas falls asleep in the car, under the watchful eye of his good friend, Dora the Explorer.

I am glad our adventure is over.


Over Yonder said...

awww! Our PWS kids are such brave warriors!! Your son reminds me of my son. WE are due for a sleep study soon and I think we will be heading to the peds tomorrow as A~man is having some BM issues...or should I say lack of them. :(tmi.

I hope they are able to give you some answers.

Mary said...

I was so glad to see this update -- I was wondering how it went. I am sorry to hear though that it was such a tough night (waxing the floors at 2am?? I would have lost it!!) I'm looking forward to hearing the neurologists insights - I really hope there's something useful to pursue. Wonderful that you have access to such an elite medical team!

The Henrys said...

I'm so glad this is over for both of you! I'm glad there are no spikes on the EEG, but I'm anxious to hear what the neurolists had to say. I hope you've all caught up on your sleep!

Elizabeth said...

HOW have I missed your blog for so long! I am so sorry. I had no idea that Weston was suffering from ESES -- or did -- and wonder if you knew that my Sophie has had two bouts of ESES in her life as well? In any case, I am glad to be back here and look forward to renewing our friendship! Thank you for commenting on my blog this morning -- your words about humming meant so much to me --

Elizabeth said...

Yikes. I meant Nicholas, not Weston! That's all you need, right? :(

Lisa said...

Thank you all for your comments and well wishes. They mean alot to me!

Elizabeth- no worries! I did not know that Sophie experienced ESES! There are so few of us. I am sure you are familiar with this scenario!

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