We had just been talking about how well he had been doing. Every morning we were waking up to clear sounding lungs after a night of beautiful oxygen and heart rate sats.
We’d changed up Parker’s morning routine, having him outside in the early morning before it got hot, and then doing his lessons in the early afternoon. Talk about the perfect combination. The sensory input Parker was getting from going back and forth from his little pool to his play set was the perfect prep for a day of learning to match numbers with their values.
It’s amazing how little it takes to make life with a medically fragile kid seem perfect. All it requires is what most of take for granted: good health.
Parker started coughing. For a kid with a trach coughing is how he brings from his lungs anything that shouldn’t be there.
For a kid with lungs like Parker a cough can also be a warning sign. We’ve had issues before with Parker having his airway plugged by mucus.
It’s scary. Scarier than hell to be specific.
Nothing gets you moving faster than the look of panic in your child’s eyes telling you that they can’t breathe.
Throwing his trach mask on, kicking up his oxygen sky high, starting a nebulizing med and suctioning as quickly as we can, we found a white, slightly frothy plug that Parker hadn’t been able to bring up himself. After we get him as close to his baseline as we can, Parker immediately crashes, sleeping hard for the next hour and a half.
The rest of the evening both Reed and I keep checking this Hero of ours to see if he has a fever, or if his lungs are sounding tight or wheezy or velcro-ish.
His night is rough, requiring extra oxygen, saline treatments every two hours, nebs every four, and a lot of suctioning. He woke up this morning feeling and looking better, but still sounding junky.
I’m figuring this surprise attack had something to do with the over the top allergy season we’re having this summer, letting me know that I’m going to need to rein in Parker’s time outside. Already.
It wasn’t until this afternoon that the panic attacked me. When all of the ‘what ifs’ hit me upside the heart, taking my breath away. When I remembered how important it is to be well versed in handling an ambu bag, having all of Parker’s meds on hand, and keeping a cool head in order to keep your child alive.
It will take a few days to work my way through this newest attack of panic. A few days to re-convince myself that I can handle these kind of events. A few days for my blood pressure, already sky high, to return to it’s usual highly medicated normal.
Then, even after I think I’ve worked through it all and am on my way back to confidence, a few months down the calendar I’ll relive it all again in the form of PTSD…the look of fear in Parker’s eyes, wondering when it happens again if I’ll be as lucky as I was this time.
Being Mama to a medically fragile child with special needs means you can never let your guard down. You’ve got to prepare yourself for the worst, and have an alphabet of alternate plans up your sleeve. You sometimes wonder when the glue that is barely holding you together is going to let loose.
Flying apart isn’t an option though. There are too many people depending on you. So you take a deep breath, pushing any residual panic down as deep as you can, whispering a prayer with the strength you have left and begin another day.
PS: Thank you to those of you helping us to get Parker to Now I Can for a round of intensive therapy. It’s a HUGE dream for us to work towards. It also gives me something positive to focus on, a plan into which to put my heart.