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.

Friday, April 26, 2013

No such thing as too much information

Since Isaiah's Kawasaki disease journey began, there have been many things I have learned. One lesson that has become a reoccurring theme lately is when it comes to your health, or that of a loved one, there is no such thing as having too much information.

Cardiac MRI

Isaiah had a cardiac MRI done in mid March to further investigate his heart function.  Although he has an echocardiogram done every 3 months, it is my understanding that he will require a more complete diagnostic test at least once a year. Last year he had two cardiac catheterizations done, but our cardiologist decided on a cardiac MRI this year, as it would be able to give us an equally good understanding of the status of Isaiah's heart.  I was thrilled by this news, as the MRI is non-invasive, which would mean no incision to worry about and virtually no recovery time, except from the effects of the anesthetic.

The results of the MRI confirmed what the cardiologists had suspected from last year's cardiac cath: 10 to 20 percent of Isaiah's heart has been damaged due to myocardial infarction (lack of blood).  In addition, the MRI revealed that there is low blood flow to other parts of his heart. Our cardiologist explained that a cardiac cath would need to be done to determine if there are any new clots or narrowings since last year and also check on the development of the collateral arteries that were visible in the last angiogram. Apparently, cardiac MRIs are useful for checking heart function and structure, but are not the best choice for viewing narrowing of the arteries. While our cardiologist decided he needed to gather more information, I realized that I needed to do a better job at educating myself about the medical tests (along with their limitations) and procedures that Isaiah was undergoing. 

Chest pains

We were fortunate enough to get an earlier appointment for Isaiah's cardiac cath due to a cancellation.    When Isaiah began to complain of a pain in his chest six days before the cath, we realized how fortunate we really were.  He did not exhibit any other heart-related symptoms and continued to be very active without any shortness of breath or increased pain. We thought the pain could be due to indigestion or a muscle strain, but it was very hard not to focus on the heart given what we know about Isaiah's condition. He continued to mention the chest pain intermittently, but when asked always answered "yes, it's still hurting" and continued to rate it a 5 on a scale of 1 to 10.  We described different types of pain to him in an attempt to get him to identify which type it was, but it is very difficult for a four year old to differentiate between a stabbing pain and a crushing pain.  To quote Isaiah: "it just hurts." At this point the cardiac cath could not come soon enough. We needed to find out what was really going on and if his chest pains were indeed heart-related. 

Unexpected CT scan

We woke Isaiah up at 6am on a Thursday in order to make it down to the hospital for 7am.  He went through the usual prep of being weighed, measured and having his blood pressure and temperature taken. He had settled into his hospital bed with a video game as we waited for the doctors to come talk to us prior to the procedure. He mentioned that his head was hurting him and suddenly started crying. The pain seemed to worsen.  He was inconsolable and was writhing and rubbing his feet together. Isaiah has a high tolerance for pain, which he has demonstrated many times since the start of this journey, so we were quite concerned. We thought it may be a headache due to the lack of sleep and the fasting. Given Isaiah's history of Kawaski disease and his blood thinning regime the doctors did not take this sudden headache lightly. It was possible that it could be due to bleeding in the brain, either from an aneurysm that had developed during his KD episodes, as inflammation can occur in arteries throughout the body, or from a bump on the head which bled due to his many blood thinning medications. The cardiology team did not feel comfortable moving ahead with the cath until the issue of his headache was sorted out. Neurology came to examine him and decided to send him for a CT scan to investigate further -- more information gathering. During this time we were in a holding pattern with regards to his medications and eating and drinking. The doctors could not give orders to start his heparin line (blood thinner) until after the CT scan. If there was in fact bleeding in his brain, giving Isaiah the heparin would be dangerous. The entire time we were worrying that clots could be forming, as Isaiah had not received his usual shot of enoxaparin (blood thinner) that morning. The CT scan did not show any bleeding or abnormalities in his brain. Neurology came to examine him again and confirmed that there were no issues with his brain. Isaiah's heparin line was finally turned on.  This information gathering exercise allowed the doctors to rule out what was not causing Isaiah's sudden headache, but did not give any definite answers as to what was causing it.  I have come to realize that this is a common practice in the medical world and in life.  Sometimes the best and only course of action is to rule out possibilities in order to get closer to finding the true answer.


Finally, the cardiac cath

The doctors decided to keep Isaiah overnight "for observation" and promised to squeeze him into the schedule for his cardiac cath the following day.  Isaiah finally went in for his cardiac cath close to 1 pm on the Friday.  While we hated that he had to go through yet another procedure, we were anxious for the doctors to get a clearer picture of the status of his arteries.  Little did we know what new information would be discovered and where it would lead us.  When Isaiah's cath was completed, one of the cardiologists came to speak to us regarding the results.  He revealed that a portion of Isaiah's left coronary artery (left anterior descending) had become quite blocked due to scarring as the aneurysms healed.  We knew from last year's cardiac cath that the distal portion of his right coronary artery had a blockage due to a clot, but this issue with his left artery was completely new.  The doctor explained to us that the team would need to discuss Isaiah's case further on Monday, but his initial thoughts were that a bypass would need to be done on his left coronary artery in order to get more blood flowing.  Otherwise, Isaiah's heart would essentially be getting blood from one main coronary artery (circumflex) and whatever collateral arteries exist.  This was definitely not the news we were hoping to receive.

Being in the know

Clearly, it is best that doctors have as much physical and measurable information as possible in order to make the best possible decisions about their patients' health.  Only so much can be garnered from anecdotal information, especially when your young patient is still learning to process what they are feeling and also how to communicate those feelings. I would never discount what a child is feeling or saying they feel, or what a parent observes or feels, but results from diagnostic testing is irreplaceable.  I think the challenge for doctors is knowing what are the correct tests that need to be done and what level of testing is appropriate.  We were relieved that the neurologists took Isaiah's headache seriously, given his medical history and ordered the CT scan,  but they were sure to mention that if he were not a KD kid on blood thinners and walked into the ER with the same headache, they would more than likely release him without any testing.  While we felt sorry for Isaiah as he had to undergo yet another test and another round of anesthetic, we were still glad they intentionally "over-reacted," as they put it.  Given Isaiah's complex medical condition, we need every decision made by his doctors be as informed as possible.  Sometimes the value of physical information outweighs temporary discomfort and safety risks (such as radiation exposure), but it is a balance.  Another KD mom I spoke to struggles with the same issue concerning her very active daughter, who is also on multiple blood thinners due to her aneurysms. She has already had to have one CT scan done on her daughter due to a hard fall where she hit her head, but worries about the risk of repeated radiation exposure, should her daughter require more CT scans in the future.  It is a definitely a challenge to figure out if the risk of taking steps to "knowing" are better than just "not knowing."

The responsibility of seeking out information does not fall on the medical professionals alone.  As parents it is our job to arm ourselves with as much information as possible when it comes to our children's health.  It means paying attention to symptoms and documenting them.  It means doing research prior to visits to the doctor.  It means asking questions and then asking more questions.  While I see huge value in online research, I do realize that looking up something on WebMD does not a doctor make.  However, it is important to go to your doctor with valid research and be able to have an intelligent dialogue with them and be able to ask the right questions to get the answers you are looking for.  My husband continually tells me not to be afraid to ask questions and reminds me that while Isaiah's medical team is great, Isaiah is only one of many patients that they see every week.  It is our job to know his medical information inside and out, because the doctors just do not have the time or capacity to do so.

After every visit to the hospital, I realize that there are still many things I need to research and understand better.  Whether it be a diagnostic test, procedure, measurement, medication or medical term.  My hope is that understanding these things will allow me to be a better advocate for my child and also provide me with some peace of mind.  I can't tell you how many times I wished I was able to read an echocardiogram image, just so I would be able to know the results of Isaiah's echos as they happen.  I sometimes wonder if it is too late for me to get trained as an ultrasound technician or go to med school.  My general bio university degree just isn't cutting it anymore.

It is ironic that this far into Isaiah's journey I am doing the same thing that parents of children who are suffering from yet-to-be diagnosed Kawasaki disease are doing: looking for answers.  Some of you reading this right now may have even ended up here because you are trying to figure out if your child has Kawasaki disease.  I have heard too many stories of parents whose children were not diagnosed with Kawasaki disease in time, because doctors repeatedly told them it was "just a virus." My advice to you is: do your research, record the symptoms, voice your opinions to the doctors, ask questions, if you don't get answers, ask more questions, always follow your intuition, remind yourself that you know your child better than anyone and repeat as necessary.  Don't stop until your child has received the care they need.  I know that we will never stop.






Monday, March 25, 2013

A real life hero

Since Isaiah's was first hospitalized in October 2011, I have continually been amazed and grateful for all of the care and support we have received.  This support has come from close family and friends, but also acquaintances and many new "friends" I have made online whose children have also faced the challenges of having Kawasaki disease. Last summer I received an unexpected, but completely touching message from a friend of mine from university.  We had not seen each other in many years and were only in contact via the graces of Facebook, but his message was very heartwarming.

Here is what it said:
Hey Carin! 
I hope you're having a good summer. 
I wanted to run something by you. As you probably know, I recently signed up to do my first full Ironman next year at Lake Placid, NY. A lot of people ask me why I put myself through all the hours of training to complete these races and I often tell them that it's because I can when, for whatever reason, so many can't. I had a marathon coach once tell our group that each race you run should be a celebration of your life and your fitness and to never take that for granted. That message has always stuck with me. I truly feel blessed and extremely fortunate that I'm able to run these races. 
With that in mind, I'd like to do something special for my first Ironman by dedicating it to those who just aren't able to go out and swim, bike or run. I've been reading your blog about Isaiah's journey and have been really inspired by his amazing courage. I know running a 13 hour race is nothing compared to what he's been able to get through, but I would like to do the Ironman for kids like Isaiah who can't, in the hopes that one day they can. So, if it's okay with you, I would like to use my Ironman race as a way to raise awareness about KD and raise some funds for KD research and support. Let me know what you think. 
All best wishes,
Mike
Needless to say, I was extremely touched.  I had not seen or talked to my friend in so many years, but yet he wanted to do something special in Isaiah's honour to raise awareness of Kawasaki disease. How amazing.

Here is my response:
Hi Mike, 
I was so deeply touched by your message that I have to admit I was teary eyed after reading it. I have not seen you in so many years (too many!) and you have never even met Isaiah, but yet you want to dedicate your very first Ironman challenge to him (and kids like him) and help raise awareness and funds for Kawasaki disease research. That amazes me and moves me beyond words. I think I made a joke in a previous FB post that you were my hero, but now you truly are. 
I think that this would be so wonderful, but I do want to clarify that Isaiah, along with many KD survivors, is actually able to run, swim and bike. Coincidentally, those are some of the few sports that he will be able to take part in. His heart itself is still healthy and able to handle physical activity. However, because he is on blood thinners (and will likely be on them for life) he can not play any contact sports in which he may sustain any head or abdominal injuries. That being said, I am not sure if Isaiah's case is true to the meaning of your dedication. However, I am sure there are other more advanced cases in which KD survivors suffer damage to their actual heart muscles and are unable to do any extreme physical activity. I would totally understand if you decided to redirect the focus of your Ironman dedication. I really want you to be true to the message you want to convey and what is in your heart. I am honoured and grateful that you even thought of Isaiah and KD. 
Another coincidence that I thought might be worth mentioning is that Isaiah's cardiologist also did an Ironman a few years ago to raise funds for KD research. It seems to be a good fit, as these kids are facing their own challenges -- their own Ironman if you will, and it is also important for them to get lots of exercise to keep their hearts healthy, as it will play a huge role in their health when they become adults. 
Thanks again for thinking of Isaiah. Regardless of what you decide, I will always remember this touching gesture. We will be rooting for you no matter what. 
BTW, do you mind if I use your message as part of a future blog post? I think it would make an inspiring post. 
I hope you are enjoying the summer and really hope to see you soon. 
Take care,
Carin
 Mike decided that he still wanted to dedicate his race to Isaiah and KD:
That's awesome that Isaiah can swim, bike, and run! I must have misread your blog post. I thought all sports were out for him. Maybe one day he can do a 'kids of steel' race -- Simon Whitfield started out doing these when he was a kid! 
I'm still more than happy to do this race for Isaiah and other kids with KD. I think there are a whole host of messages that I want to convey that mesh quite well with this cause. Beyond doing this race for those who can't, I'm hoping that I can inspire others to get active and celebrate their health. And, if this inspires survivors of KD to get into triathlons who need to stay 'heart healthy', then even better! And, while I would never dare compare a triathlon to fighting a disease, both require a tremendous amount of courage and toughness to get through. Most of all, you need a strong heart - both figuratively and literally - to keep going!
Mike is absolutely right.  All of the KD kids I know and read about are all strong and very brave.

I always say that Isaiah is my hero, but my friend Mike is a very close second.  I am truly touched by his gesture and also by his dedication.  From what I understand, preparing for an Ironman race is a complete lifestyle change.  It requires an insane amount of training and preparation, both physically and mentally. I find this type of dedication very inspiring.  I am sure that when Isaiah is older he will be inspired too and hopefully be motivated to stay active and maybe take on a similar challenge.

Thank you, Mike. You are a true inspiration, both as an athlete and a human being.  I will be forever thankful to you for bringing awareness to Kawasaki disease and dedicating your efforts to my little guy.  Good luck with your training. We will be cheering for you.

Mike in action at the Ironman 70.3 Pocono Mountains race last year.


[Just a note: Looking back at my message to Mike, I realize that I had made an error.  Isaiah does in fact have damage to his heart muscles.  His recent MRI has confirmed what the doctors had assumed based on his cardiac cath last April: approximately 10% to 20% of his heart muscle has been damaged.  I won't get into the details here (that's for another post) but thankfully, his overall heart function is still good so he can still do his running and jumping.  I am not sure if a "kids of steel" race is in his future or even authorized by his cardiology team, but at least he can still catch his friends at tag, shoot a basketball like it's nobody's business and kick my sorry butt at Kinect tennis.]


Thursday, February 28, 2013

Gratitude

When I first began writing this post, Isaiah had not been diagnosed with his second case of Kawasaki disease.  However, given what we have gone through yet again, the original sentiments inspiring this post are even stronger.  It had been over six months since I had published anything prior to the post about Isaiah's unexpected second bout of KD.  Many milestones had passed, including Isaiah's first day of kindergarten, fourth birthday and the anniversaries of his KD hospitalization and discovery of his aneurysms.  It would be easy for me look back and reflect on how many of these moments were very bittersweet for me.  I could write about the struggles we have been through this past year and how this unexpected journey has challenged us in ways we never imagined.  However, in keeping with the New Year's tradition of resolutions and starting fresh (even though it is already the end of February), I prefer to focus on my "theme" for the year: gratitude.

Gratitude is good for you

I generally consider myself to be positive person, who is thankful for all the blessings in my life. However, I was especially inspired by an article in Scientific American which highlighted studies indicating that the regular practice of gratitude had positive physical, emotional and social benefits -- even more reason to count our blessings. 

Things I am grateful for...

I have been very fortunate in many aspects of my life, but this list focuses on the things that I am grateful for with regards to Isaiah's journey.  Here are some of the things I am grateful for:
  • I am grateful that I live within driving distance of one of the best children's hospitals in the world; where the doctors not only know what Kawasaki disease is, but also know how to treat it and are able to answer questions about it.  I have read too many stories from parents who are so frustrated, because they are not able to get answers from the doctors at the hospital their child is being treated at, due to lack of knowledge and experience. 
  • I am grateful that I live in a place where IVIG is readily available and accessible to my son.  I am fortunate that IVIG is one of the treatments that is covered under our government's Ontario Health Care system.  My understanding is that IVIG is very expensive and I can only imagine how difficult it must be for some families, especially in developing countries, to afford to pay for IVIG treatments.  I am saddened to think that there may be children that go untreated for Kawasaki disease, because their family was unable to pay for the IVIG.
  • Further to my previous point, I am grateful that my family has health coverage through my husband's employer.  Isaiah currently takes four different prescription medications.  His enoxaparin shots, in particular, are quite costly.  These type of medication costs would be a huge burden on families that do not have any drug coverage.
  • I am so fortunate that I currently have the option to be a stay-at-home mom.  Isaiah has monthly blood tests that must be done at the hospital, as well as echocardiograms and cardiology clinic visits every three months.  Add onto that his two hospitalizations, a follow-up visit with rheumatology and clinic visits with thrombosis and you have a whole lot of time spent at the hospital.  Surely, if I had a "regular" job all of this "time off" would have caused problems with my employer and my co-workers. My hat off to all those moms who work outside of the home and are still able to manage the complicated life of a child with health issues.
  • I am grateful for the support of wonderful friends and family.  I am constantly mentioning this in my posts, but that is because I can never thank any of my friends and family enough.  Their love and support is what has kept us going for the past year and helped us through the especially hard times when Isaiah has been hospitalized.
  • I am grateful that I have access to medical professionals that are leaders in their field and specialize in Kawasaki disease.  I am grateful not only for my access to them, but grateful for the fact that they are all wonderful at what they do, genuinely care about Isaiah and have done everything they can for my little guy.
  • I am grateful that Isaiah was diagnosed correctly with Kawasaki disease.  If he had not been diagnosed correctly, we would have no idea that he had developed coronary aneurysms, he would not  be on blood thinning medications and he would be walking around constantly at high risk of experiencing a heart attack.
  • I am grateful that Isaiah is here.  I am sorry if this statement seems morbid and decidedly NOT uplifting, in contrast to the main message of my post.  But this is the reality of Isaiah's situation.  If he was not diagnosed or was not receiving the care he is currently receiving, who knows if he would be still be here.  I thank God everyday that he is.  
Being here is something we should all be grateful for.  We should be grateful that we are here and those we care about are here.  Even though Isaiah's life may be perceived as more delicate, because of all that he has been through and as a result more precious, in reality all of our lives are delicate and precious. You never know what tomorrow may bring.  So go be grateful.  Go count your blessings and share them.  Go thank someone for something.  It's good for you.

Wednesday, January 16, 2013

Quick update: second bout of Kawasaki disease

A new post is long overdue and it saddens me that this post was created in order to share news of Isaiah's second battle with Kawasaki disease.  Coincidentally, I have been working on a post entitled "Gratitude," which is much more uplifting. Despite the recent turn of events I plan on completing that  post, so it will be coming soon.

I will not be going into too much detail right now. I just wanted to post a quick update for those of you who have been concerned about Isaiah this past week.

Symptoms

Isaiah started off with a low grade fever last week, which we assumed was just the beginning of a cold or flu. We kept him home from school, but he seemed to have lots of energy during the day and was acting very much like his normal self. He did complain of a pain in the middle of his neck, which we thought may just be a sore throat.   I took him to his pediatrician on Wednesday, but he did not note any swollen lymph nodes of redness of his throat.  He took a swab for strep throat, but we did not receive the negative results until Monday.

On Thursday Isaiah's fever seemed to intensify.  The thermometer readings were higher and the Tylenol was unsuccessful at bringing his temperature down to an acceptable level. We were administering Tylenol as soon as one dose began to wear off.  On Friday he began to develop a rash, chapped red lips and complained that his legs hurt. This was all too familiar to me.

Could Isaiah really have Kawasaki disease again?!  My understanding was that it was not very common to have it more than once.  Additionally, Isaiah's energy level and appetite were so much better than during his first battle with Kawasaki disease. I was also aware that other viral infections can cause similar symptoms. The other thought that ran through my head was that perhaps this is just the way Isaiah's body will express any serious illnesses from now on.  Perhaps the Kawasaki disease has changed his immune reaction and this is his new normal.  I reached out to a couple other "KD moms" and they responded that their children did show some of the KD symptoms post-KD due to other illnesses. However, none of them had experienced a rash.

Over the weekend Isaiah's rash would disappear and then reappear with different levels of intensity. His body seemed to coping with whatever he had, as he was able to remain fever-free for extended periods without Tylenol.   I thought maybe we were in the clear.  Maybe it was just the flu.  There were several points during the weekend when we considered taking him to the ER to be checked, but did not due to these "glimmers of hope."

On Monday he awoke fever-free and rash-free.  By lunchtime his temperature started to creep up a bit, the rashes began to appear and he was still having problems walking normally. I sent Isaiah's cardiology team a quick email and they called me back to tell me to bring him to the ER to be checked. And thank God they did. I will be forever grateful to our cardiologist and our nurse practioner for making that call.

Diagnosis and treatment

After being examined by the ER doctors, Isaiah was seen by the Rheumatology team, who quickly diagnosed him with Kawasaki disease...again.  By this time, Isaiah's rash had gotten worse and he was showing more typical signs of KD (red eyes, red and swollen hands and feet) and could barely stand due to pain in his feet.  Despite this, he still had energy and seemed to be in good spirits, considering the circumstances. It was very hard for me to believe that he had Kawasaki disease for a second time. However, disbelief was just one of the many other emotions I was feeling at the time.  My "short post" is already much too long, so I will leave it at that,

Last night, Isaiah was treated with IVIG, which was the same treatment administered the last time.  During his first bout, he required two rounds of IVIG and two rounds of pulse steroids. So far, this one round seems to have done the trick.  Based on Isaiah's symptoms and behaviour, it seems that he experienced a "milder version" of KD -- if such a thing exists.

Looking forward

An echo was done on Isaiah today and it does not show signs of any new aneurysms or enlargement of his existing aneurysms. While this is good news, we are not in the clear. Not even close. Aneurysms caused by Kawasaki disease often are not formed until after the symptoms of Kawasaki disease have disappeared. Isaiah's heart will be monitored very closely for the next few weeks.  He already has two echoes scheduled and will likely have more prior to his MRI scheduled in April. In the meantime all we can do is ensure he keeps up with all his medications and hope and pray for a positive outcome.

We will likely be discharged tomorrow, which is wonderful news. Two and a half days at the hospital is more than enough.

A word of thanks

I want to express my heartfelt thanks to all of those that called, texted, messaged and emailed me or simply sent some good vibes our way.  I appreciate all of your thoughts, prayers and offers to help. I am always amazed and overwhelmed by the number of people who care about Isaiah and our family. We are truly blessed.  There are a few friends and family have made these last few days much easier and we are so grateful. We are also thankful to the staff at SickKids for taking care of our little guy and getting him home quickly. Of course, we are eternally grateful to Isaiah's cardiology team for urging us to have Isaiah checked, for answering phone calls and emails swiftly, even after hours, for providing us with complete and honest information and for giving Isaiah the highest level of care possible. 

I will do my best to post updates of any significant developments.




Sunday, July 29, 2012

1st Kawasaki Disease Parent Symposium in San Jose, CA

I have been asked to spread the word about a Kawasaki disease symposium that is happening in the Bay area.  It is being organized by the Kawasaki Disease Foundation, a US non-profit organization dedicated to Kawasaki disease issues.  The event will be hosted by KD specialists from Seattle,  WA.  This is a wonderful opportunity to have your questions answered by two of the leading physicians in the field and meet other parents who have been affected by Kawasaki disease.

Following is the basic info:

When: Saturday, August 25, 2012 from 1-4 P.M.

Where: Good Samaritan Hospital Auditorium
2425 Samaritan Drive
San Jose, CA 95124
(408) 559-2011

What: 
Join KD specialist, Sadeep Shrestha: Assistant Professor, Department of Epidemiology, School of Public Health, University of Alabama-Birmingham, Birmingham, AL, who will be talking about the Genetics of Kawasaki Disease.

And Dr Michael Portman: Professor, Attending Cardiologist and Director of Cardiology Research at Seattle Children’s Hospital, who will be speaking about the Paradigms of Kawasaki Disease.

Babysitting will be available.

You can register online at the Kawasaki Disease Foundation website: http://www.kdfoundation.org/index.php/component/chronoforms/?tmpl=component&chronoform=KDSymposiumSanJoseAug2012

You can also get more information on their Facebook event page.

Contact info: 

Vanessa Gutierrez
kawasakidisease2007@yahoo.com

Kate Davila
katedavila@yahoo.com

I am sure it will be a successful event and would love to hear back from any attendees about insights they gained while attending.

Saturday, July 21, 2012

No news is good news

It's been quite awhile since my last post.  There seemed to be nothing new to report regarding Isaiah's health, or perhaps I was just avoiding composing a post, as it would force me to think about Isaiah's heart problems.  In between check ups I find myself almost forgetting how serious his medical problems are.  We have fallen into so much of a routine of administering his shots and his oral medications, that they no longer serve as strong reminders of his situation.  However, as the date for his echocardiogram check up came closer and closer, I found myself thinking about Isaiah's aneurysms more and more and my anxiety level steadily increased.  A few days before his echo, I was watching a KD-related video online and ended up in tears.  The little boy in the video had suffered from KD, but despite a large delay in receiving treatment, he was fortunate enough not to end up with any long term effects.  Photos of the boy brought me back to the awful days of Isaiah's hospitalization and a feeling of despair washed over me. Why did Isaiah fall into the small percentage of KD survivors that end up with aneurysms?  It was the first time, in a long time that I cried over Isaiah's condition.

On Wednesday we headed down to SickKids for Isaiah's check-up and clinic visit.  He is so used to going there now that he calls it "my hospital."  He even makes a game of guessing what level we are going to park on.  As always, the time during the echo was full of anxiety.  Mike and I stared at the screen, trying to make sense of the images and measurements without really knowing what any of them meant.  When the sonographer finished her report, we had to wait while she had the cardiologist sign off on it.  She was gone for quite awhile and we worried that there was something wrong.  She eventually returned and told us that we could go to our next appointment. The wait between the echo and our actual clinic visit with Isaiah's nurse practitioner was an excruciatingly painful one.  It is difficult to balance preparing for the worst and hoping for the best.

As it turns out the echo, blood work and ECG were all good.  His heart function is fine and the echo did not indicate any clots or changes in size of any visible aneurysms.  Although we are always hopeful for some improvement in the size (ie. lessening) of Isaiah's aneurysms, at this point we are happy with no change at all. Yay!  Perhaps Isaiah's condition has stabilized for now.  While we continue to hope and pray for improvements in Isaiah's health, we will always be grateful for the wonderful life that he is living now and will use these cherished moments, as a source of strength to overcome any challenges that may lie ahead.

Isaiah doing some post-echo gaming.