Sharing our story to raise awareness of Kawasaki's disease

On October 19th, 2011 my 2 year old son, Isaiah, was diagnosed with Kawasaki disease. Life has not been the same ever since. I want to share his story to help raise awareness of this disease. We were fortunate that Isaiah was diagnosed and treated for his illness. However, Isaiah developed multiple aneurysms in his coronary arteries as a result of Kawasaki disease. If left undiagnosed, this disease can result in death.

If I can help even one child by sharing our story, then I will have done right by my son. He is such a brave, strong boy and I know that when he grows older he will be glad that I shared his story.

Wednesday, November 13, 2013

The bypass

This post is long overdue.  To be honest, I was not sure if I was ever going to write it.  I have avoided it until now, because I did not want to think about the anxious days leading up to Isaiah's bypass, the difficult days after his surgery or the excruciatingly painful day of the actual operation.  These were the darkest days of my life.

In most of my posts I attempt to weave in a theme or drive home a main point, but this time I will not even attempt to do so.  I simply want to share part of my family's experience with you.  I am sure there will be many details that have been forgotten due to the chaos of those days and others that have been blocked out by my heart and mind.  Please forgive any errors I may make with regards to medical details or terminology.  Keeping all that straight can be a challenge even on the best of days.

Friday, April 5th, 2013 - Devastating news

Isaiah finally went in for his cardiac catheterization on the Friday. He was unable to have it done the day before due to a sudden and intense headache.  When the cath was over, one of the cardiologists we know came to speak to us about the results.  I cannot clearly recall much of the conversation that followed.  The doctor explained that Isaiah's left marginal artery had developed significant narrowings due to scarring within the artery.  Arteries damaged by the inflammation caused by Kawasaki disease heal from the inside out.  The artery walls develop scar tissue, but if too much scar tissue develops it may result in narrowing of the arteries, referred to as stenosis.  Based on the results, he suspected that Isaiah would need to have bypass surgery to compensate for this narrowing.  Isaiah's right coronary artery was already blocked due to a clot, so if we did not do the bypass his heart would essentially be working with only one major artery.   The doctor explained that the team would meet on Monday to discuss Isaiah's case further before making a decision, but he had decided to admit Isaiah, as he would be taking him off of his ASA and Plavix in preparation for the possible bypass.  Isaiah would have to stay at SickKids over the weekend on a constant heparin infusion.

We were in disbelief.  We knew the day might come when Isaiah would require bypass surgery, but we never thought it would be that day. I was feeling a range of emotions: fear, anger, despair, sadness.  I felt them all, but they were wrapped up in a fog.  I have heard people speak of out of body experiences and I am sure that afternoon I experienced something similar.  I felt as if this was not happening to my family and that I was merely watching someone else have to deal with it.  I quickly tried to snap out of it.  I needed to be strong for Isaiah and the rest of the family.  We had already been through so much and we could surely get through this, but it was going to be the hardest challenge yet.  That afternoon was the first time I openly cried at the hospital since Isaiah was originally diagnosed with aneurysms.  I feared that my resolve to remain perpetually optimistic was going to be put to the test.

Saturday, April 6th, 2013 and Sunday, April 7th, 2013 - The weekend of waiting

The weekend we spent at SickKids was surreal.  Isaiah was not at all phased by having to stay at the hospital and did not question us regarding it.  Instead, as always, he went with the flow.  He thoroughly enjoyed having the Wii set up at his bedside around the clock, built towers taller than he was with daddy in the playroom and even engaged in some very spirited games of bowling with one of the hospital volunteers.  Isaiah's boisterousness was sharply contrasted by many of the recovering cardiac patients who shared our ward and I kept wondering how could this bundle of energy really require bypass surgery?  The constant heparin drip and ECG monitor that needed to be attached to Isaiah at ALL times, as well as the visits from family and friends that required us to explain the situation over and over, were strong reminders of how serious this really was.  While I knew it was highly unlikely, I wished and prayed that the team would meet on Monday and realize that Isaiah's status was not as precarious as they had originally thought and that a bypass would not be necessary at this time.
Isaiah hanging out in the hallway of our floor.
His ECG monitor could not transmit any further than here,
so we were not allowed to leave the floor.


Bowling with a telemetry pack and IV line is no easy feat.

Caught eating bacon in the cardiac ward.
Once in awhile is okay, right doctor?


Monday, April 8th, 2013 - Bypass confirmed

Isaiah's primary cardiology team came to see us early on Monday morning.  I could tell from the looks on their faces that the news was not good. The team had in fact decided that the best course of action for Isaiah was to perform double bypass surgery.  Isaiah's cardiologist explained that the surgeon would be using the internal thoracic artery (also known as the internal mammary artery) to bypass two portions of Isaiah's LMA.  The plan was to have the surgery done the very next day.  Everything was moving at such an alarming pace.  We worried that the emphasis we had placed on Isaiah's complaints of chest pains had pushed the doctors to make a rash decision.  A four year old can not be expected to accurately describe the pain he is experiencing.  However, we were reassured that this decision was made taking everything into account: the physical evidence from the cardiac cath and the MRI, as well as Isaiah's symptoms.  We asked numerous questions and received answers for all of them, but it was still hard for us to accept that this is what needed to be done.  Did we really have any other choice?  I recently read an article in which the author, who happens to be a doctor herself,  likens these decisions to allowing the medical system to guide your child across a glass bridge.  She writes: "The medical system beckons, “It’s safe. We’ll guide your child across the glass bridge.” But your emotions, your life experience, your gut, and your eyes can only see the sheer drop." This is exactly how it felt. We knew that the doctors were making the best decision possible for Isaiah and were so fortunate that the team was made up of renowned pediatric cardiologists and surgeons, arguably the best in Canada, if not the world.  However, even with all of these great medical minds, as a parent you are taking a leap of faith.  You are entrusting your child, your most precious gift, to a group of doctors and relying on them to do everything humanly possible to "make him all better," but unfortunately, nothing in medicine (or life) is guaranteed.

The child life specialist came to see Isaiah, gave him a little doll and showed him the drainage tubes and attached drainage bulbs that he would have when he woke up from his "special sleep."  We did not talk to Isaiah in detail about how this special sleep would be any different than previous special sleeps that he had had.  He has always been the perfect patient and we did not want to change that by scaring him or making him anxious.  Late that evening, the surgeon came to speak to Mike personally.  I was not at the hospital at the time, so I only received the information second hand.  The surgery was estimated to take approximately 5 to 6 hours and would be "on-pump," meaning the beating of Isaiah's heart would be stopped and a heart-lung bypass machine would take over for the heart and lungs, allowing circulation of blood throughout the rest of the body.  The thought of Isaiah's heart being stopped engulfed us in trepidation in of itself, but we also worried about possible long-term cognitive effects from the cardiopulmonary bypass machine. But again, we had to do what needed to be done and take that leap of faith, entrusting the doctors and the wonders of modern medical technology to take care of our son.


Tuesday, April 9th, 2013 - Bypass day

Mike had stayed with Isaiah overnight, so I headed down to the hospital early in the morning.  When I went to his inpatient room it was empty.  I hurried down to the second floor to catch up with them and luckily got there just before they entered the pre-surgical area.  For whatever reason, Isaiah was being distant from me and wouldn't give me a hug.  I was heartbroken.  It was as if I needed him to support me, instead of me supporting him.  I knew he was tired and did not grasp the seriousness of the situation, but it was still hard for me to accept that he would not provide me with the affection I so desperately needed at that moment.  The anesthesiologist came to examine Isaiah and talk to us.  Before I knew it, they were ready to take him away.  For all of Isaiah's other procedures I had always been allowed to carry him into the procedure room and stay with him until he drifted off peacefully, like the perfect patient, under the spell of the magical bubblegum-scented  anesthetic.  This time was different.  I did not even ask if I could accompany him and no one offered.  They just began to wheel him away.  As we waved goodbye, he looked confused and I remember hearing him say "What?" and then seeing the nurse speak to him with a smile on her face, in an attempt to distract him.  Then the doors closed and I could not see or hear him anymore.  There were thoughts running through my head at that moment that I did not dare to speak or acknowledge at the time, for fear that it would make them come true.  I wondered, what if that was the last time I would see my little boy alive?  What if he never hugged me again?  What if he started to cry because he did not know what was going on and mommy had not stayed with him until he fell asleep?  And what if that was his last memory?  As the tears stream down my face as I type this, I wonder how I was able to push all those thoughts away on that Tuesday morning.  I knew that I had to stay strong and not show any cracks.  Once you allow a moment of weakness it is hard to regain composure.  I could not allow my mind to race with all these negative thoughts or I would never been able to catch it.

Isaiah putting on his brave face before his surgery.

We were told to return to the waiting area after approximately 5 hours.  Mike and I had breakfast with his brother and sister-in-law and later met up with some of his other sisters.  All the while, we tried to make polite conversation and discuss matters other than Isaiah's surgery.  I knew it was on all of our minds, but we did not discuss it.  Most of the waiting was spent in silence.  When the 5 hour mark came and went we grew more anxious.  We knew that the 5 to 6 hours stated was an approximation, but every additional minute was another minute of terrifying uncertainty.  Six hours turned to 7 hours and our worry turned into panic.  The kind ladies at the volunteer desk put a call into the surgery reception, but they were unable to provide us with any information and could only relay a message to the surgical team, who would provide us with an update when they were able.  At this point I did not know what to think.  Was no news good news?  Surely if something had gone terribly wrong they would have told us something?  Or had something gone very wrong and were they now desperately trying to fix it?  The waiting was excruciating and I felt as if I had not exhaled in hours.  We received word around 4 pm that he was now off of the bypass machine, but they still had to stitch him up etc. We were told at 5 pm that the surgery was complete, but the surgeon did not come out to speak to us until 6 pm.

The surgeon brought us into a private room to update us on the operation.  First he assured us that Isaiah was fine and that his heart was functioning well.  We were so relieved, but our moment of joy was short-lived.  He then went on to tell us that the surgery had not gone as well as planned. The upper graft "did not take" and he believed that it was already closed off.  The second graft appeared to be working, but the flow was not very good.  Isaiah's arteries were too small and the damage from the Kawasaki disease made them difficult to work with, even with the microsurgery team involved. They kept starting over and trying again and again, resulting in the surgery being much longer than estimated.  Eventually, they had to stop.  The surgeon kept repeating that Isaiah's heart was still functioning well and that he was thankful for that.

We were devastated.  Leading up to the surgery and the entire time I was waiting and worrying, it never once occurred to me that the bypass may not be a success.  I worried about something catastrophic happening and that scared me to death, but I believed that it if that did not happen, then everything would be perfect.  I viewed it as all or nothing.  In my mind there was no in between.   After receiving this news the whirlwind of emotions started up yet again.  Anger. Why did this have to happen?  Isaiah was the sweetest kid in the world, but yet he could not catch a break.  It was always bad news, followed by bad news.  Why was God doing this to him?  Worry.  It was possible that the failed grafts could potentially make things worse by causing a blockage.  The bottom line was that Isaiah was no better off then he was before the surgery.  His level of risk was high enough that the doctors recommended that his bypass be done quickly and after almost 10 hours in the OR his level of risk remained the same.  Guilt.  We had sent our son across that glass bridge and he had made it to the other side, but he never arrived at his destination.  We were the ones that allowed the doctors to open up our son and perform major surgery on his heart. We were the ones that signed the papers.  We were the ones that made this decision on Isaiah's behalf.  We were the ones that put him through this for nothing.  We were the ones that would have to live with the guilt if Isaiah suffered adverse effects from the unsuccessful open heart surgery.

We were anxious to see Isaiah and were finally able to go into the Cardiac Critical Care Unit (CCCU) at 8 pm.  Twelve hours had passed since we had last seen our dear boy. The bypass was arranged so quickly, so we did not have a pre-op appointment and while I knew that Isaiah would have his chest drainage tubes I did not know what else to expect.  I was not prepared for what I saw.  My heart ached when I walked into the room and saw Isaiah lying on that hospital bed.  He had a breathing tube in his throat, a nasogastric tube in his nose, two chest drainage tubes, pacing wires, a PICC line in his neck, ECG wires and IV lines seemingly attached to every limb.  They had tied his arms down by his wrists so that he would not pull at the breathing tube or the tube in his nose.  He looked so tiny, helpless and fragile lying there, wearing a diaper for the first time since being potty trained.  This was one of the saddest moments of my life.  Although he was on a heavy dose of morphine and was unable to speak because of the breathing tube, when we spoke to him, he was able to understand and respond.  We told him that he was so brave and he slowly nodded his head.  A single tear ran down his cheek.  I didn't know if he was sad or scared or in pain or all of those things.  It took every ounce of strength I had left to hold back my own tears.  Isaiah needed to know that everything was okay, so that was not the time for tears from mommy.  As much as I would like to remove that image from my memory it is permanently embedded and every time I think of it, my heart breaks all over again.  My only comfort is that Isaiah does not recall those moments post surgery very well and hopefully over time he will forget them completely, even if I never will.


Wednesday, April 10th, 2013

Isaiah spent three nights and two days in CCCU. Those days were filled with ups and downs.  Isaiah was extubated (had his breathing tube removed) the morning after the surgery and was able to drink water and eat a rainbow of freezies. He was in a lot of discomfort and was not very alert or responsive.  His lack of responsiveness worried us and we prayed that the extended time he had spent on the bypass machine had not caused any long-term cognitive damage and that his listlessness was merely due to the morphine he was on.  We did manage to get a smile out of him and were told that if he did well that night he would be able to eat something in the morning. That evening, before he fell asleep, he asked me about maple syrup and waffles, in that order.  It seemed my boy was slowly returning to normal.
We managed to get a smile out of Isaiah the day after his surgery.


Thursday, April 11th, 2013

Two days after the surgery, Isaiah did not have the best of days. They have taken him off of the IV morphine and he experienced chest discomfort and also some nausea, stomach pain and vomiting. This made it impossible to enjoy his much anticipated pancakes and maple syrup.  However, he did have his nasogastric tube and one chest drainage tube removed. The removal of the drainage tube was extremely painful, but in usual Isaiah-fashion, he was very brave through it all. We were able to prop him in a chair, so that he could sit up for a little.  He finally managed to eat some dinner later in the day. 

Isaiah sitting in a chair for the first time after his bypass surgery.
That evening I saw a group of friends and family grieving uncontrollably outside the ICU, after what I assume to be news that a child they love had passed away or was critically ill. It was so heartbreaking and a strong reminder of how fragile life is. I later posted the following to Isaiah's Facebook page: "Please hug those you love extra tightly today. I know I did."


Friday, April 12th, 2013

Friday was a much better day for Isaiah. He was moved out of the CCCU and up to the regular cardiology ward.  He had his last drain tube removed, as well as the PICC line in his neck and pacing wires. It was painful for him, but he handled it like a true warrior, as always. He was more alert and was able to eat some solid foods. I even snuck in some McDonald's fries for him -- don't tell his cardiologist. He still complained his tummy hurt and was very tentative to move around, but he was definitely taking some positive steps towards recovery. 

While Isaiah was watching TV that day, something made him smile for the first time in a long time. Seeing this brought tears to our eyes. It felt so good to see him happy.  When things are going well in life, there are many things we take for granted. It's only when times are tough that we truly realize how important these things are in our lives. Seeing your child smile is one of those things. When your child is unable to smile, there is nothing in the world you would not give up to see them smile again.  Isaiah was recovering from a long bypass surgery and everyone was doing everything they could to make him feel better, yet he turned around and made us feel better. We needed to see that smile. It gave us hope and made all the bad things seem distant. Even though we knew he had a tough road ahead, that smile made that moment better. 

Isaiah with one his amazing nurses from CCCU
after she wheeled him up to the regular heart ward.
That night Isaiah was sharing a step-down room with other patients.  There was a young boy, about 10 years old, in the bed beside him who was scheduled for a heart transplant the next day.  I have no idea what was wrong with his heart or how long he had been waiting for a new heart, but I do know that he showed such overwhelming bravery and courage.  He was so excited for morning to come and to begin a new chapter in his life.  I never stop being amazed by children faced with adversity.  They find a way to cope and persevere beyond adults' expectations.


Saturday, April 13, 2013

We spent most of Saturday trying to get Isaiah to walk.  Moving around was painful for him due to the soreness of his chest, but it was an important step of his recovery.  When he finally took a few steps without holding my hand I was so proud.  It reminded me of when he was learning to walk during his toddler years. It was so hard seeing him in pain and and watching him struggle with simple day-to-day movements.  The thought that he may have been going through all of that for nothing made it that much more difficult to watch. 


Sunday, April 14, 2013

Just five short days after undergoing his 10 hour bypass surgery, Isaiah was given the okay to go home.  The young body is an amazing thing. While Isaiah was still weak and certainly had a lot of healing to do, he had come a long way from the limp, helpless little boy I had seen laying in the bed in the CCCU.  I had mixed emotions about Isaiah's return home.  Of course I was happy that he would be back home and our family would be reunited.  However, as far as anyone knew he was returning home at the same level of risk that he had prior to his surgery.  He had an echo done a couple of days after the surgery, which showed that his heart function was the same as it was pre-op.  While this could be seen as positive news, it did not provide much comfort.  The doctors had moved with alarming swiftness to perform the bypass, yet he was being sent home no better off than prior to this urgent surgery.  We learned later that part of the reason he was scheduled for surgery so quickly, may have been that he was already an in-patient, which allows the process to be expedited more quickly than if he had gone home and returned at another time.  However, this did little to ease our worry.  We were told that we would have to wait and see how things evolved over time.
Glad to be home!  Isaiah surrounding by many of his thoughtful get well cards and gifts. 
I was so happy when Isaiah was finally able to leave the hospital, but we left behind many children that will be at SickKids for a long, long time and some indefinitely.  I met one mother whose child had been there since she was four months old and was now just over a year.  She is not expected to go home until she receives a heart transplant. Chances are this beautiful little girl will spend many more birthdays at SickKids, but her mother, who is far away from supportive family and friends, still manages to be friendly and upbeat. People are often amazed by how I have handled Isaiah's situation, but it is moms like these that are the amazing ones.


Recovery and check up

Isaiah recovered remarkably quickly and was back to his old self in no time.  In June he had a cardiac catheterization (angiogram) and cardiac MRI done to assess his heart's blood flow and function, and to see how the graft was doing. The angiogram showed that one of the grafts is working, but the other graft was "lost," as suspected. The flow in the remaining graft is low, because the artery used is quite small, but we still considered this to be positive news. The hope moving forward is that the artery continues to grow and strengthen, allowing greater blood flow.   The MRI results were essentially the same as prior to his bypass surgery. While no change is usually considered to be good news, this means that the bypass did not make things any better (or any worse) and has not had much influence on his stability or prognosis. We are told that this is a situation in which time will tell. In the words of Isaiah's cardiologist: "In the face of uncertainty there is always hope."  And hope is what we hold onto.  We hope that the graft strengthens and that the blood flow improves.  We hope that his left anterior descending artery does not continue to narrow.  We hope he continues to develop lots of collateral arteries to help supply blood to his heart. 


A word of thanks

I would be remiss if I did not take time in this post to extend a heartfelt thank you to all those that helped us through the very difficult days surrounding Isaiah's surgery.  Thanks to all of you for your messages, prayers, thoughts, words of encouragement and good vibes you sent our way. We appreciated every single one of them.  I was overwhelmed by the support we received from our "online family."  

A huge thanks to Isaiah's school community. The students and staff were amazingly supportive and went above and beyond to make us feel loved and cared for. The gifts, meals, cards, prayers and the letter you wrote to the Pope were appreciated more than you know. We are grateful for all that you have done and continue to do for our family.  I can't imagine sending Isaiah to school anywhere else. You are truly more than just a school community, you are our family.

Unending thanks to our friends and family, who provided us with immeasurable love and support.  We would never have been able to keep it together without all of you.  We are fortunate to have each of you in our lives and please know that even amid all of the chaos of those days, we still noticed and appreciated every gesture, every comforting word and every act of kindness.

Lastly, tremendous thanks to the staff at SickKids.  Thank you to all the doctors who did everything in their power to help Isaiah. Thank you to the amazing nurses who took such wonderful care of Isaiah.  They all work tirelessly, but with smiles on their faces, which is a testament to how much they genuinely care about their patients.  Thanks to Isaiah's cardiologist and nurse practitioner.  Thank you for making yourselves so accessible to us and for always being so supportive. Thank you for showing us that the world of medicine does not need to be cold and sterile.  Thank you for caring for Isaiah and not just his heart.


The future

Isaiah had an echo done in September and his heart function remains relatively good and at a stable level.  He will have another echo in December and will likely have another cath and MRI done in March. In the meantime, we are happily watching him grow up and do all the things that little boys his age should be doing.  He recently turned five and has developed a new love of the Power Rangers.  As I watch him show off his Power Ranger moves and fling himself on the couch, those dark days of his bypass seem like a lifetime ago.  None of us know what the future will hold, but we must choose not to live in fear, but instead make most of the present, because as they say, it is a gift.

6 comments:

  1. I can't really type because the tears are making it hard to see the keyboard. Thank you for writing this extremely personal and informative story, Carin.

    ReplyDelete
    Replies
    1. Thanks for taking the time to read it. I know it's quite a long read! Glad you were touched by it. It was certainly a piece I wrote from the heart, hence the jumping around from thought to thought.

      Delete
  2. Thank you for sharing your story. This must have been a nightmare for you to go through. A brave tiny boy, indeed! xxo

    ReplyDelete
    Replies
    1. It was certainly not an experience I would wish on anyone, but it is behind us now. And yes, Isaiah certainly is brave. Thank goodness...it means I can be brave too!

      Delete
  3. Thank you for this blog and for sharing your frustrations, your fears and courage throughout this ordeal. You and Isaiah are in my thoughts and prayers.

    ReplyDelete
    Replies
    1. Thanks so much for your thoughts and prayers. They are appreciated more than you know!

      Delete