Theodore’s Story

Theo’s Update

Yesterday, we returned to McMaster Children’s Hospital for a follow-up appointment with Theo’s pediatrician and plastic surgeon. Theo’s wounds are healing well but his digits are starting to auto-amputate and he required an assessment for amputation of his legs. His plastic surgeon is pleased with the regeneration of healthy tissue but believes that Theo is not strong enough to undergo the sedation required for surgery. Theo’s pediatrician also confirmed that Theo’s health has declined since his last visit – his breathing has become progressively more struggled, he is vomiting consistently, and he is now constantly dependent on oxygen. We have seen signs over the last few weeks, which we suspected would indicate that Theo hasn’t improved, but hearing our fears reaffirmed was devastating.

We’ve had several end of life discussions with Theo’s doctor now and I respect and appreciate his honest and straightforward approach. He has endeavored to ensure that we are prepared for the inevitable whenever that time comes. But how can you ever prepare yourself to say goodbye to your child? I once read that having a child is like having your heart walk outside your body. One day soon, I won’t just be burying my son, I’ll be burying my heart too.

I now know that Theo isn’t destined for life on this earth. His constant suffering reminds me of that daily but truthfully, I’m afraid. I’m afraid to say goodbye and I’m afraid to live without him. And I’m afraid of not knowing if I’ll still be able to hold him tomorrow…or the next day.

Life doesn’t change for us. We continue to take it one hour at a time and count our blessings for each additional day we get to spend with Theo. Theodore’s life is not about the happy ending, it’s about the story. The story of a beautiful, inspiring, little boy that has shown more strength and spirit than anyone else I know. And, I’m so proud to call this little boy my son.

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Adventures of Theo

The unfurled sheets on the cot next to Theo’s hospital bed, the empty coffee cups scattered on the bedside table beside the feeding pump, the hurried footsteps of nursing staff outside our door, the gentle hiss of the oxygen concentrator. These are the all too familiar reminders of the fragility of our son’s life.

Theo was admitted back to the hospital yesterday after suffering from several episodes of breathing apnea. We were certain we were going to lose him during the night but he has pulled through and seems to be breathing stronger this morning. He is being administered oxygen and with a portable machine now available to us, we’re hoping to head back home later this evening.

This recent hospital visit has emphasized the short time we have left with Theo and we realize now that we’re not living enough. It will not be easy but with a portable pump, suction and oxygen machines, we are not confined to the house. For the remainder of our son’s life, we will create as many memories possible not defined by Theo’s illness or limitations.

To start: planning Theo’s first birthday party. We never had the opportunity to celebrate with him because he was on life support at the time. Next: visiting the CN Tower and exploring the Toronto Zoo, two places Theo has never been. After that, our only limitation will be battery life.

Life is short and time truly is precious. Let the adventures of our precious Theo begin and let their memories endure forever.

Questions and Answers

How’s Theo doing?

My usual response: He’s doing well. Or, he’s having a good day. But, truthfully – most days I don’t know how to answer this question.

In my writing and in life, I seek to celebrate the positive in our lives and Theo’s recovery. This means rejoicing when he reaches small milestones such as smiling and regaining head control. I’m not denying that I don’t have moments where I’m lost in pity and despair – these happen fairly often but if I didn’t extract the optimism from our situation, I’d lose myself permanently. Many of our friends have young children and each one of our siblings had a child last year. That means Theo has four cousins within seven months of him. My healthy, vibrant nieces and nephews (whom I love like my own) are walking and laughing and instead of joining them, Theo sits immobile, crying in pain. It’s during these times that I can’t help but think of how unfair life is. And, my optimism fails me.

We have good days and bad days, good nights and bad nights. Theo’s limbs cause him significant discomfort. The slightest change in position results in him screaming out in pain. So, we can hold him (in certain positions) but this is usually after he’s received his pain medication and even still, it takes a while before he settles. Theo will eventually lose his feet and parts of his fingers due to necrosis – they cannot be saved. His wounds (where the necrosis hasn’t reached the bone), which extend up his hands and to his knees are healing but the healing process is slow and long. We change his dressings daily, which is necessary to prevent infection but this is incredibly painful for him. A fever (even low grade) could be an early sign of infection so each time it happens we find ourselves nervously and closely monitoring Theo’s status…fearing the worst.

When I was a new mom, I remember reading one of the many resources catered to tired, helpless mothers searching for answers to their crying sleepless babies – in other words, normal behavior for an infant. You should be able to distinguish between your baby’s cries from relatively early on, one author suggested. I’ll admit that in those first few months, before I could decipher his way of communicating, I usually found myself nursing Theo whenever he cried. Knowing that this satiated his need for both comfort and hunger eased my worries. Now, I’m struggling to decipher Theo’s cries once again though for different reasons. Theo often cries because he’s in pain, sometimes because of his underlying neurological condition and sometimes simply because he wants to be comforted – a response typical of any other child his age. Once again, I am feeling helpless and perplexed but Theo and I are adjusting and just as he’s learning how to communicate with us, we’re learning how best to comfort him.

Is Theo improving?

Yes. Maybe. I’m not sure. Some days he seems to be getting stronger and others, when he’s likely battling a virus or an infection, he’s lethargic and shows signs of decline. We’ve been on this ride long enough to know that we’re not exiting the rollercoaster anytime soon and that any indicators of improvement will be small and infrequent but each and every one will be celebrated.

We may not have any answers but this in no way means that we’d like to avoid these questions. In fact, we welcome them – please continue to ask about our little warrior. Even if Theo’s status is unchanged and his recovery is slow, every time you ask about him it reassures us that his fighting spirit has not been forgotten.

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.

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.

Happy 13 Months!


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Today is Theodore’s 13 month birthday. I honestly didn’t know if we’d make it here. In fact, we weren’t sure that we’d make it to his first birthday.

We celebrated Theo’s first birthday two days after arriving in the Pediatric Intensive Care Unit at McMaster Children’s Hospital. Theo was on life support at the time – a ventilator was breathing for him, hemodialysis was filtering his kidneys and vasopressors were keeping his heart beating. The day before we were told that he had less than a 20 percent chance of survival.  My once vibrant baby was now a terminally sick toddler.

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Celebrating Theo’s first birthday in PICU 

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Theo’s birthday banner made by our wonderful PICU nurses

I promised him then that when he left the hospital, we’d throw a big party with a cake full of sugar and artificial colours (unlike the healthy one I had planned) that he could eat and smash to pieces.

Today we blissfully celebrate one more month with our son. We also celebrate that Theo’s kidneys are functioning and he’s breathing on his own! He’s still being fed through a nasogastric tube but I look forward to the day that he can have his first bite of cake surrounded by everyone who loves him.

Life would never be the same

Have you ever experienced one of those calamitous moments where you immediately realize that life as you know it will be changed forever?

This has happened to me twice now.

The first occurred when I was nine years old. I remember standing in the living room of my farmhouse with my brother and sister staring at the faces of my mother, grandmothers, aunts and uncles. Their eyes red and puffy. Their faces numb with shock. My mother gathered us around her. Before the words left her mouth, I knew.  I knew who was absent. I knew that life would never be the same.

My father had died suddenly in a workplace accident earlier that day. He put us on the bus that morning, and kissed us goodbye: for the last time.

The second occurred Friday, January 17th, 2014 when I arrived at the Emergency Room in Timmins with Theodore.  We were rushed from triage to a trauma room and it immediately filled with doctors and nurses. It was in that moment that I knew. I knew it was serious. I knew Theo was very sick and would not survive this unscathed. I knew that life would never be the same.

Minutes later I was on the phone with Mark, shaking, telling him to get to the hospital immediately.  The team swarmed around Theodore, looking for a vein. I watched helplessly as they hooked him up to oxygen (and ventolin to open up his airways) and inserted two intra-osseous lines into each of his calves (a process of injecting directly into the marrow of the bone when iv access isn’t possible). He was administered fluids and antibiotics. A chest xray followed which revealed that his right lobe and the pleural cavity (the space between his lobe and his chest cavity) was filled with purulent fluid. A chest tube was immediately inserted to drain his lung and we were asked to step out of the room during the procedure. When we returned, we stood alongside his bed, rubbing his little head, whispering in his ears and watching his breathing become increasingly more shallow. And then it stopped. We were rushed out of the room.

Mark and I sat outside our son’s room for approximately 30 minutes. 30 agonizingly long, painful, minutes. The door opened at some point and we could see chest compressions being performed on Theodore. We didn’t know if he was dead or alive. Mark gripped my hand tightly and we waited. Waited to hear our son’s fate.

A social worker approached us during this time and I refused to talk to her.  I remember thinking, ‘Why would a social worker be involved if Theo was going to survive this? ‘ Finally, the ER doctor came out and told us that they had lost him for a while (18 minutes, I later learned) but Theo was alive and breathing with a ventilator.

Our son had died. Our son was still alive.

One Month

Tomorrow marks one month since we first arrived at the Emergency Room in Timmins.  One month since we’ve seen our son walk, smile and laugh. One month since life as we knew it has been forever changed.

It still doesn’t feel real some days.  But our new reality is this: our perfect healthy son is now chronically ill with a significantly shortened life expectancy.  If I’m honest, I’m still adjusting to the loss of my son as I knew him. He will never again run to me smiling after I return from work. I will never again hear him say Mama.

But, after being told on several occasions over the last month to say goodbye to him, I count my blessings every single day that I can still hold my baby in my arms.

We’ve been settled in Timmins now for a week and a half.  When we were first transferred from McMaster Children’s Hospital back to Timmins, we were given a grave prognosis. Theodore would likely succumb to complications from his illness in the coming days to month. We were heading home to keep Theo comfortable and cherish his remaining time as a family.

Since we’ve arrived here, though, Theo has made some improvements. His lungs and heart are strong and his breathing has become less labored. He’s also managing his secretions better than when we left Mac.  He receives physiotherapy daily and we’re noticing an increase in his range of motion and stronger control of his head.  Theo is still on quite a bit of pain medication (due to the damage to his limbs) and a medication to help him relax.  His digestion system seems to be working effectively which still surprises his doctors because it’s only been a few weeks since he was diagnosed with multiple organ failure.

My best friend, who is a Pediatric Nurse from Sick Kids in Vancouver has been with us in Timmins since we returned. She has been invaluable in suggesting new treatment and comfort strategies to try with Theo and has showed us how we can change and bathe Theo ourselves.  She’s also helped us feel more comfortable holding him. She has spent the majority of her visit here with us at the hospital even spending a few nights with him sleeping in the hospital bed next to his.  I can’t put into words how lucky I am to have her here with us during this time.

She is one of the many people who make up our support system both in Timmins and around the country. We have been overwhelmed with the amount of support we’ve received – prayers, donations, gift cards, frozen meals…the list is endless. We have felt so loved and haven’t faced one step of this difficult journey alone.