Two nights ago, I was crocheting in my chair like the little old lady I am inside and Derek was jogging on the treadmill when I heard a strange sound. I was immediately suspicious and immediately anxious, but brushed it off. A few seconds later, I heard it again, but louder, so I called for Derek to shut it down so we could listen together and try to figure out what we were hearing.
Subconsciously, we knew, but our brains had not yet caught up.
Let’s back up the truck. Earlier this year, we determined that we were not going to add to the noise of being parents to kids with special needs. Sure, there were and are some things that inevitably come up and we discuss openly (within reason) or will answer questions as we see fit. But, as far as our children’s physical health goes, we know we’ve jumped the hurdles and left them way behind in the dust. It’s been over two years since any sort of emergency room visit, and all reports for our son bearing his brave scar come back great. Rock solid, one may even say. Up until last week, both our kids had perfect attendance at school (it’s preschool, but perfect attendance is perfect attendance). Unprecedented for our family.
Then last week, Jet got a nosebleed at school–the kind not caused by picking, and the kind that because of his special combination of him and his meds lasts for almost an hour. The kind that used to be a precursor to illness. Surely, that was just a coincidence though. Weird, random, no big deal.
Over the weekend, Jet sneezed more than anyone in the family. It’s not allergy season. He wasn’t stuffy or congested and didn’t have a cough. Again, these sneeze attacks used to be a precursor to the bad colds. Not those kind, I mean the really bad ones. But we’ve not had one of those episodes in months. He probably doesn’t even have asthma. His pulmonary hypertension is basically nonexistent.
Now it’s Tuesday night, and we suddenly hear barking and gasping and hysterics. What in the world…? Our bodies were in action before our brains were. We haven’t heard a cough that bad, a wheeze that bad, in actual years.
And the routine comes back in an instant. Sit him up. Grab the rescue inhaler and backup nebulizer. Hand over chest to count breaths, feel the heart beating and lungs contracting, retracting. Phone in other hand with 911 dialed but not connected, just in case. Shoes on, wallet and keys in reach. Waiting, waiting, waiting…is it going to get better? Worse? Do we connect the call? Are we overreacting? Hold it together, don’t cry. Stay calm. We’re the adults.
Just like our subconscious recognized what was happening before our thoughts could catch up, Jet’s did too. Except this time, it’s different. We have an audience of one scared brother who has never witnessed this before while the other is old enough to panic, old enough to be aware of the crisis, to realize this is beyond his control. It’s all beyond our control.
And then more decisions. If we can just get him to breathe. In and out. Five times. And repeat. It’s not working, and we still have the phone in hand and try to decide what to do. Stay calm, stay calm, stay calm! God, it’s not fair! We are past this! We should be past this! Knowing that what we do next is going to have lasting effects, we do it anyway. One of us has to hold him still, restrain his thrashing, panicked movements, and the other has to hold the rescue medication in place. And he still isn’t taking in enough of the medication to ease the barking, wheezing cough. He’s breathing too fast for it to work. Stay calm. We can do this. God please, help him breathe!
Until finally, finally, he takes one breath. Slow enough that we know the medication will start to work. Four more. You can do it! Here comes another coughing fit. Move the device and grab a towel because it sounds like something is coming up from his lungs. If that happens, we have to call, but it doesn’t. Relief. Then terror, again. Phone in hand, again. Restrain, mask over face, and deep breath. Too fast. Try again. Again. And now it’s working, slowly but surely. Then finally, he’s calm. Oxygen is up to 98. And he falls asleep with the pulse ox still on his finger.
We leave the room, put our phones down. One of us hops in the shower just in case. Laugh with a tinge of hysteria about looking forward to hospital breakfasts. Fill some prescriptions to pick up in the morning for an extra boost on those lungs. Sleep a restless sleep waiting for the next episode…and it doesn’t come.
Today is Thursday, and he’s better. We spent the day yesterday having him practice holding the device during his treatments, every two hours while he’s calm, because he’s old enough to learn how. Knowing that giving him some measure of control during one of these episodes may help keep him calm. Showing him old photos of him chillaxing with nasal cannulas and breathing masks that look like duck bills. He’s totally got this.
The cough started again mid-late afternoon yesterday, but we’ve got this. Fresh, cold air to calm down the airways. Warm bath to loosen up the crud building up. Lining up all the equipment that had been buried in the cabinet, putting some in each room because we’ve accumulated extras over the years. Checking on him before we go to bed, no fever, no wheeze, no words…but a look of gratefulness and awareness in his eyes that wasn’t there before.
Ten minutes, tops. From start to finish, ten minutes is all it took to pop the bubble we’ve been living in. That even after three and a half years, this is still, occasionally, our reality. We’re so grateful, so thankful, that this isn’t our daily life. We know that CHD is so much worse for so many kids and their parents. His heart is repaired and we are so grateful to his doctors, surgeons, God. We don’t know why his heart was able to be repaired, giving him the ability to live a full life but others are not, and we don’t take that for granted. And while our ultimate goal is to not give any sort of special treatment because of his condition, these ten minutes proved that sometimes, we can’t.
But this time gave us something extra, outside of the weird PTSD parents of heart warriors get. This time, it took ten minutes for our almost five year old son to realize this, this, is what having a brave scar means.
our simple life 