Ever wonder what it’s like to live with Congenital Heart Defect as a constant in your life? It’s confusing, and exhausting. A cold, a flu, a normal behavior, bad day or sleepless night can be side effects of a heart that is failing. For the past few months Josh hasn’t been sleeping well at all, he has frequent wake ups, leaving him lethargic during the day, affecting his behavior and generally making him not as much fun to be with. For months I have been wondering, is his heart failing yet again? (sleeplessness can be caused by heart failure, night terrors or just a childish ‘I want my Mummy’) Is that T-Valve causing issues again? OR, is it just normal childhood behavior? Do we take him to his Cardiologist, or do we wait? When is it bad enough that we need intervention? On Saturday Tim finally said to me ‘I’m worried about him’ and given the length of time I have been worrying about his lack luster ways and loss of verbal skills, I took Tim’s sign of concern as an even bigger worry. So, on Saturday I began to pray, we needed help but we didn’t want to rush him to the hospital and throw a lot of things into question. You see, we were told that if his heart started to affect his daily life then they would need to do further surgery. (replace the T-valve). The kicker, is that when you have a pre-excisting condition like Josh, getting insurance on a trip is very tough, he has to be stable for months prior to any trips, and he can’t have anything on the horizon. We have a trip planned for the boys (planned and paid for) to Disney. We have wanted to do this for a while now, but always the big question is when? When is it safe to take him? After his last surgery when the doctor told us we didn’t have to come back until June we knew this was the right time. So, if we take him in, even if his heart hasn’t changed since the last ECHO, and he’s showing signs of his quality of life being affected, then the trip is off. Which is okay if it really is his heart, but what if it’s just normal childhood things like night terrors or a bug that he can’t get over? So on Saturday I began to pray that God would be clear, that we would get an answer, and soon, on whether or not to take him in for a check. We needed Josh to get some rest, real rest, to see if this was just a lack of sleep, and we needed to know how he was breathing at night, so I got our futon mattress and laid it on his floor and decided to camp out in his room that night. He woke up seven times, but I noticed it was panicked fear that drove him to scream out for us. The difference with having me there was big, and though he was waking frequently he was easily put back to sleep once he realized I wasn’t leaving. His lack luster had mildly changed on Sunday, his verbal ability improved and when I asked him this time if he was scared at night he was able to articulate that he was afraid of the dark. So, we got a night light and drove to our friends place in Waterloo. During the drive he had a good nap, and that night though we were at a friends’ house we slept in the same room with him and he only woke once. The change in him was drastic on Monday. He was sledding, playing, and talking more. Last night I did end up on the floor of his room again, but he only woke three times and each time he was easily reassured and put back to bed.
So you see, living with CHD means that anything and everything could be heart related or absolutely normal. If this was Kaleb having these troubles it wouldn’t even dawn on us to be worried, we would just slough it off as a phase he’s going through, but with Josh it’s a constant worry. Is he again suffering from a failing heart?
Josh needs sleep, we have to find a way to get him to really rest for the next while to make sure this is definitely not a heart issue, but things are looking up. The decision of taking him to Sick Kids or not for now is off the table and the tightness in my shoulders is slightly eased. I am learning that living with CHD will never be ‘easy’, we will always be holding him up against the ‘normal’ child and wondering what’s normal and what’s not. We will always see tiredness, lethargic behavior, loss of appetite as signs of heart failure, and we will always wonder, should we be taking him in or are we be selfish by not taking him in? The only thing that will make navigating this path any easier is that we have God to call on for help and answers.
I remember wondering if life would ever be the same after that conversation with the doctor during my pregnancy when Josh was diagnosed… the answer I have gotten? Nope. It will never be the same, it’s not easy, but the rewards are beautiful. Our highs are higher and our lows lower than most parents experience, but those highs are AMAZING highs, his achievements are bigger in our eyes, his health is a wonder to us, his smiles seem brighter and when his eyes sparkle our hearts literally warm up in the glow.