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What it Means to be a "KD Parent"

In the past I have often referred to our "new normal" -- the way in which we now live our lives, since Isaiah was diagnosed with coronary aneurysms.  Over time, this "new normal" has just become our normal.  Isaiah's scheduled medications are a daily reminder of his condition and Kawasaki disease seems to be ever present in my mind, but its effects have slowly faded to the background and just become part of the fabric of our lives.  I am often asked, "How is Isaiah doing?" and find myself automatically answering with a standard, "Great.  Everything is stable."  I do not feel it necessary to go into detail about Isaiah's latest test results or the health effects we deal with as a result of his multiple blood thinning medications.  In fact, I have become so effective at "glazing over" these details and get caught up in dealing with the chaos of every day life, that sometimes I actually forget what we are truly living with....until I receive a jolting reminder.

These past few months the reminders have come in different forms.

Back in September I received a message from a KD mom that I had become friends with online.  Her son, Benjamin, is the same age as Isaiah and also has multiple giant aneurysms.  Bren-Ann messaged me to let me know that Benjamin had recently suffered a heart attack, which caused significant damage to his left ventricle. Due to the new damage and his existing giant aneurysms, the doctors were now considering him as a candidate for a heart transplant.  I was devastated by this news.  Benjamin had just gone through open heart surgery in January to replace his aortic valve, which was damaged due to inflammation from Kawasaki disease.  How much more could this sweet boy and his family endure?  Benjamin recently travelled all the way from Calgary to Toronto to have a cardiac cath done at SickKids Hospital.  We are hopeful that the doctors there will be able to find an alternative course of action.

In November, I received some unsettling news from my very first "KD parent friend."  Pauline's son was diagnosed at 18 months old and had developed multiple giant aneurysms.  He underwent bypass surgery at 14 years old, but still had a giant aneurysm which did not require intervention at the time and had remained stable for years....until now.  Michael, now 21 years old, was having a cardiac cath performed and the results appeared to show multiple clots in his aneurysm.  I was distraught for his family -- the day they had been dreading had finally come along, but I was also saddened for Isaiah.  The fact that Michael's aneurysm had stayed stable for so long was a source of comfort to me.  It gave me hope, that contrary to what medical history would dictate, perhaps Isaiah's aneurysms would remain stable for a long time and he would never require additional surgical intervention.  With this news I quickly came crashing back to reality.  Fortunately, it turned out what the doctors thought were clots, were actually shadows caused by the dye swirling around in Michael's giant aneurysm.  I was so relieved for Michael and his family when I heard the good news.  Michael continues to be an inspiration to us, not only medically, but also because of the strength, spirit and determination he has exhibited throughout the years. He has been actively involved with the Kawasaki disease research team at SickKids, where he was a patient for many years, and is currently studying to be a nurse in the cardiac ward.

Two days after receiving Michael's news, Isaiah woke up in the middle of the night with a nosebleed. Nightly nosebleeds are a somewhat regular occurrence, since he is on so many blood thinning medications.  However, this nosebleed went on for quite awhile and eventually Isaiah began to complain that his stomach was hurting him.  I took him to the bathroom, but before we could make it to the toilet, he vomited on the bathroom floor.  There was a large pool of dark red blood on the white bathroom tile.  This was not the first time Isaiah had vomited blood after a nosebleed, as the blood tends to the drip down his throat and not just out his nose.  However, seeing all of that blood caused me to worry about internal bleeding.  Perhaps Isaiah had gotten hurt at school and sustained an internal injury that I wasn't aware of.  I quickly asked him if he had hurt himself at school or if anyone had hit him or run into him.  All "no's."  I checked his abdomen for any signs of bruising, but didn't see any.  In the end, it turned out that it was just a nosebleed that had resulted in Isaiah swallowing a great deal of blood.

Blood Isaiah vomited after his nosebleed.

These "reminders" have reinforced to me what it actually means to be a "KD parent."  It means remembering to give your child their medication on time every day and trying really hard not to panic the one time you forget.  It means always remembering to order your child's medications when they are running low and making sure you always have extra on hand. It means ensuring your child has a level done when they are supposed to and trying not to worry too much in between levels whether or not they are on target. It means being ready to deal with nosebleeds at any given time, day or night.  It means staying calm even if your child vomits blood or has blood dripping out of his eyes during a nosebleed.  It means having a Band-Aid (or two or ten) in your purse at all times.  It means having your heart skip a beat every time you see your child's school's phone number come up on call display and then being relieved to hear that they are just letting you know that he is in the office with a nosebleed.  It means panicking when your child complains of any type of pain in their torso and having them point to the exact area, to ensure it is not in the area of their heart.  It means excessively worrying every time your child has a fever and constantly checking for rashes, in case it is a rare second (or third) occurrence of Kawasaki disease.  It means finding random bruises on your child's body daily and worrying that one day a stranger will call child services on you.  It means steering your child away from sports like hockey and football and encouraging them to pursue swimming or tennis.  It means holding your breath when your child climbs up the jungle gym at the park and resisting the urge to climb up right behind him, because "he's a big boy now."  It means making sure your child tells you (or the teacher) if he bumps his head, even by accident, and making sure he knows he won't be in trouble, "no matter what."  It means putting a helmet, knee and elbow pads on your child when he is learning to ride his bike, but really wanting to surround him in bubble wrap instead. It means giving your child the freedom to grow and spread their wings, but all the while really wishing they would stay little so you could keep them close and protect them forever.

More than all these, being a KD parent means living with uncertainty.  The reality is that we never know exactly what is going on inside our child's body.  Despite the frequent echos, ECGs, MRIs, CT scans, stress tests and angiograms, we cannot see everything that is happening at all times. We worry between each test and worry even more the day of these tests, wondering what the results will be today.  As much as we try to prepare ourselves for whatever comes, we never really are.  We find tremendous comfort in other KD parents and the stories they share, but we know that every child is different, so their story may not become our story.

But above all, being a KD parent means having hope and trust.  We trust in our children's doctors and hope they provide our children with the best care possible. We hope the future brings new medical developments that will improve our children's quality of life or maybe even one day save their lives.  We hope our children's bodies find a way to heal themselves or ways to cope with the devastation that Kawasaki disease has left behind.  We put trust in the greater powers that be (whichever you believe in) and hope they will watch over our children.  We put trust in our children, that they will continue to be strong and persevere through all that is to come.  We hope that we can be as strong as our children, because we know they need us to be.  Pauline and Bren-Ann showed so much strength and composure when I communicated with them during their recent ordeals.  I am sure that inside they were "freaking out" and wanted to cry and scream, but they didn't.  Instead, they dealt with things moment by moment, put trust in the experts around them and received the strength they needed from their children. Because that's what KD parents do.

I leave you with something Bren-Ann wrote to me that stayed with me and felt like it encapsulated with it means to be a KD parent:  "So we go home and carry on. He returns to school and we try to be grateful for each day..."

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