Month: February 2014

The Unknown

I’m desperately trying to live in the moment – to dwell in the life currently unfolding in front of me, and not the fear of what‘s to come.

Theo’s breathing has recently become more laboured and we know that this could be a sign of what’s to come. The quantity of medication that is necessary for pain management of his limbs could eventually slow or stop his breathing. Theo also has some difficulty swallowing (an outcome of his current neurologic function) so he is at risk of aspiration pneumonia from his secretions.  Right now, he is very susceptible to the average childhood cold – a common virus could have serious (even fatal) implications for him.

It’s days like these that I feel like I’m walking a tightrope of hope above a pit of adversity and praying for balance.

One day at a time.

Let’s Play

Today, we went for another stroller ride around the hospital and spent some time in the playroom. Theo responds to some sounds, so we thought he might enjoy playing with a few noise-making toys. I sat on the mat and Mark placed Theo on my lap. I immediately saw his eyes water as he snapped a quick shot of us.

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A Smile is Worth a Thousand Words

A few days ago, Mark and I stepped out to grab a coffee while one of Theo’s nurses sat with him. When we returned, she and Theo’s OT (who was also huddled next to his bed) turned to us grinning. He smiled, she said. I skeptically looked at his OT who nodded in confirmation.

Theo smiled. Theo smiled. THEO SMILED!

Theo’s multiple cardiac arrests had left his brain deprived of oxygen for close to 30 minutes. The MRI, conducted five days after his arrests, revealed significant and global brain damage. We were given a range of possible interpretations for this, with each Neurologist aloofly providing a likely list of extrapolations for Theodore’s life: He will never be able to live independently. He will never have a meaningful life. He will never be able to smile.  He will never be able to coordinate breathing on his own.

Children can surprise us, they added, as an insignificant afterthought. The brain is capable of regenerating itself, they added. But with the damage to Theodore’s brain, the probability of this happening is slim to none, they added.

At this time, Theo has limited neurological function. We are being told that based on clinical assessment, he is cerebrally blind, which means that his vision is normal but because of damage to his brain’s occipital cortex, the processing of visual information is impaired.  His brain injury also means that he is susceptible to seizures, which could cause further brain damage.  And, because of the necrosis to his limbs – which is causing him significant amount of pain – therapy, at this time, is limited.

But the probability of slim to none is enough for me to believe that there’s some hope. Theo didn’t fight his way back from death twice to stop fighting now.

Theo has been successfully breathing on his own for over a month now. And now, a smile! I have to believe that this is only the beginning for our little warrior.

Now, if you’ll excuse me, I’m off to try to catch my little boy’s precious smile.

A Breath of Fresh Air

Never before has this cold, dry winter air felt so good. Theodore left the hospital for the first time in 39 days…even if just for a minute!

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We’re in the process of transitioning him from continuous feeds to bolus feeds, which means that we’ll have more flexibility to leave his hospital room for short periods of time. As the weather gets nicer, Mark and I plan on taking him for walks around campus – showing him where his Mom and Dad attended classes, lived in residence, and met for the first time.

Miracle Mondays

“There are two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle. “ – Albert Einstein

This quote is not a prelude to an existential debate.  Although some aspects of Theodore’s recovery cannot be explained by scientific reason, Mark and I both have science backgrounds and are grounded in the reality of Theo’s illness.

But sometimes I have days where I know my heart is closed or I feel like my life is becoming clouded by the misfortune surrounding us. And then I realize that I’m missing out on the goodness in our life. I’m missing the opportunity to openly allow optimism and appreciate the everyday miracles surrounding our family right now.

So, the miracles I refer to are not extraordinary phenomenon (though I welcome them too!) – they are humble moments of beauty and wonder that allow us to open our hearts and recognize our many blessings.

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Today’s miracles are that recent diagnostic blood work came back normal, showing that Theodore’s kidneys and liver are functioning and there’s no sign of any infection. And, the Ronald McDonald House had a room available for us again so Mark and I can be as close as possible to our little warrior.

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Bon Voyage

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Tonight, Theo and I were transported back to McMaster so he can undergo additional assessments for his wounds and neurological status. We are going to miss the staff in Timmins and wish we had more time to say goodbye. Thank you TDH for taking such good care of our little boy! I’ll provide an update once my little jet setter is settled into his new room.

Theodore’s Story – Part 2

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It’s unlikely that he’ll survive the night, the pediatrician told us, when we first arrived in Hamilton. Theodore was breathing on a ventilator and his blood pressure was critically low.

We later learned that Theo was suffering from septicemia as a result of an invasive strain of Group A Streptococcus. This is the same bacterium that causes the common illness strep throat. We can harbour this bacterium without demonstrating any symptoms and it is easily transferred from individual to individual.

According to Health Canada, an infection from Strep A is very rare, with only a few hundred cases a year, 20 to 30 per cent of them fatal. We were told that that the risk of Theo developing this infection was 1 in 300,000. I’ve quickly learned that statistics are irrelevant when you’re that 1.

Septicemia (also known as septic shock) occurs when an infectious agent enters the bloodstream and causes reduced blood circulation and heart failure. About half of all patients who succumb to septic shock die of multiple organ failure and survivors are often left with difficulties regulating their blood pressure and/or damage to their hearts.

The goal for patients suffering from septicemia is to stabilize their blood pressure and cardiac output while the source of the infection is treated with antibiotics. Treatment involves fluid resuscitation and vasopressor therapy (dopamine, norepinephrine and epinephrine) – agents which cause vasoconstriction and increase blood pressure. However, one of the main complications of vasopressor therapy is that it can impair blood supply to the tissues of the extremities, often causing limb necrosis.

That night, Mark and I didn’t leave Theo’s bedside. With heavy hearts, and empty arms, we watched our suffering son, knowing that there was nothing we could do to help him.

Night became day and Theo prevailed. He was stabilizing but results of the blood work showed multiple organ failure. It’s a waiting game, we were warned. Don’t expect survival.

As hour after hour passed, Theo slowly defeated the odds. Two days later, we were told that he would survive but would never be the same little boy again. He was still very sick and would suffer debilitating complications from the infection. I felt simultaneously joyful and devastated. Theo would be innocently denied the normal life of a healthy, carefree toddler but our son was still here and fighting. We wouldn’t have to say goodbye.

Listen to the Mustn’ts

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Every night after his bath, we would read Theo a story before bed. My favourite books include the collection of poems by Shel Silverstein. Today, this poem seems especially fitting for our little warrior.

Listen to the MUSTN’TS, child,

Listen to the DON’TS

Listen to the SHOULDN’TS

The IMPOSSIBLES, the WON’TS

Listen to the NEVER HAVES

Then listen close to me—

Anything can happen, child,

ANYTHING can be.

–       Shel Silverstein

Theodore’s Story – Part 1

In retelling this part of Theodore’s story, I must warn that it may be difficult to read.

About 6 hours after arriving at the ER in Timmins, we were air lifted to McMaster Children’s Hospital. Theodore and I flew down together and Mark was lucky enough to catch a commercial flight that would land him in Hamilton only a few hours after our arrival.

My sister and her husband met us there and our parents and siblings arrived within the next few hours. I was asked to wait in the family waiting room until the team at Mac had Theo transferred and stabilized. An hour after we arrived, one of the nurses, with a sense of panic, rushed to get me.

She guided me to Theo’s room and I pray that what happened next would one day fade from my memory.

My view of Theo was obstructed by a group of doctors and nurses surrounding his bed. At the foot of his bed stood the pediatrician directing orders to his team like a captain instructing his officers. From the bed came the counting of chest compressions. Pulse check, demanded the pediatrician. Time, demanded the pediatrician. Epinephrine, demanded the pediatrician. And, repeat.

I collapsed in the doorway and couldn’t will myself to move. My sister, I screamed. Get my sister. The next thing I knew, she was by my side and a nurse was guiding us to a couch at the back of the room. I stared in shock while she held me tight, shaking and praying, Lord keep Theo alive. Time stopped.

We’ve got a pulse, said a voice from the crowd. I finally took a breath.

My son had just survived two cardiac arrests in one day. He had defied death again and with our little warrior’s unfathomable strength and will, it wouldn’t be the last time.

Fridge Art

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This picture now proudly adorns our fridge. I know – it’s a basic piece of white paper with scribbles of crayon on it. Pretty standard as far as kid’s art goes.

But it’s Theodore’s first and only piece of artwork, made at daycare exactly one week before he became sick. Theodore’s strength has been inspiring but we still have a lot of unknowns. Like how long he’ll be with us. Or, if he’ll ever have use of his hands again. So to us, this particular piece is extra special.

Yesterday, we stopped in at Theo’s daycare to collect his things and visit his teachers. Often, I find myself going through the motions of our new life – spending my days cuddled up next to Theo in his hospital bed – that I’m caught off guard by things that remind me of his previous life. I emptied his cubby, gathered his little running shoes (that he’ll never wear again), looked around the room (filled with other healthy children) where he used to play freely, and found myself in tears.

So when his teacher handed us this picture, Mark and I looked at each other with a sense of pride that only parents can have. We will cherish this picture and continue to pray that it will not decorate our fridge alone.