It doesn't take a rocket scientist to figure out that childhood asthma sucks. For those of you who haven't experienced it first-hand, here's a list of the ten things I hate about having a kid with asthma. (This list doesn't include the most obvious thing I hate about it, and that is that my kid sometimes can't breathe and there's very little I can do about it.)
When your kid is diagnosed with asthma, you are told to avoid the things that trigger her asthma. Well, duh? Thing is, each person is different, so you have to figure out the triggers for yourself. The common ones include: smoke, dust, humidity, pets, colds, sprays, marker odor, exhaust, exercise, powders, cleaners, mold, crying, perfumes, pollen, food, and meds. So...just about everything. Not only that, but most of these triggers are essentially invisible.
They sent us home from the hospital the first time with a journal so we could track her condition and begin to identify triggers. I tried using it, I really did. But, most days, nothing happened. And on the days something happened, there were no obvious triggers. None at all. So far, the only thing I can say with any confidence is that she is more likely to have an asthma episode if she is already sick. But what causes her to be sick? Are colds turning into asthma or is the asthma causing cold-like symptoms? Who knows? I know I don't.
The triggers are as nebulous as the symptoms. During our "education," we learned to look for symptoms that Pink P might be headed for a flare up. They include: coughing, shortness of breath, chest tightening, wheezing, reduced activity, and inability to sleep. First of all, Pink P has never been a great sleeper, and she seems to have a cough most of the winter, no matter what, so these two symptoms are not reliable signs.The material tells us that we should look for four or more coughs per minute, obvious sucking of the chest, or increased breathing rate. But by the time we get to any of these symptoms, we are headlong into a flare-up and on our way to the ER. There is no going back. I can't tell you how much it stinks to miss the early warning signs (if there are any) and end up with a kid who struggles for every breath. I can't imagine a more effective producer of mom-guilt!
Green = good. Red = bad. When Pink P is in the hospital, we receive a lot of asthma education. Don't get me wrong. I appreciate being educated, but they make it seem so easy. In theory, Pink P's symptoms should alert me to her triggers and also indicate whether she is in the green, yellow, or red zone. Problem is, as far as I can tell, she is all green until she isn't, and then we end up in the emergency room. Using pretty colors as visual cues does not help me figure out when she is slipping into an episode, so the interventions that should go with each zone end up being only marginally helpful. Once she's old enough to use a peak flow meter, I hope this will get easier. For now, I am hanging on every breath...and cough.
Once you've misread the triggers and find yourself with a kid whose symptoms clearly indicate an asthma episode, you can only do two things. First, you can give her breathing treatments that include fast-acting meds to reverse the symptoms and get her breathing better. After back-to-back treatments, if the symptoms persist, your only other option is a visit to the ER, particularly since asthma is usually worse at night (and on the weekends at our house, for some reason). There's nothing I like more than a middle-of-the-night or early-morning visit to the ER. Nothing. After many hours of waiting and trying to keep your preschooler happy in the confines of a triage room, you will either be sent home (if the steroid they gave her after 2 hours of waiting works) or admitted (if it doesn't).
My new plan is to start the steroid at home (since we have extra) if Pink is slipping into an episode and hopefully avoid the ER altogether. But, even then, if the steroid doesn't work, we will find ourselves right back in the ER waiting to get admitted. This last go around, Pink P and I spent a total of 9 hours in the ER over the course of two days. Asthma already sucks. I really wish it didn't entail visits to the ER.
Sudden hospital breaks from life:
If your kid can't breathe, she gets to go to the hospital. Pink P doesn't seem to mind so much. She has her own TV and can watch it all day long. The nurses bring her juice whenever she wants it, not to mention the occasional Popsicle. Grandparents and friends come to visit and bring toys. It's not a bad gig (except for that not-being-able-to-breathe part of it). Thing is, when your kid is in the hospital, so are you. This means life as you know it becomes frozen in time and space. The world literally goes on without you, and somehow you just have to manage.
Pulse oximeter readings:
Pulse oximeters measure the level of oxygen saturation in the blood. Healthy kids have pulse oxes 95% or above when awake and 90% or above when asleep. When Pink went to the ER during the first episode, her pulse ox was 87%. Once a kid is hospitalized, she gets her very own personal pulse oximeter. Forget the fact that she hates keeping the darn thing on her finger or toe or the fact that it makes going to the bathroom that much more challenging. The pulse oximeter also constantly reminds us of how little Pink P can breathe. Plus, it records and transmits her stats to a command center, so whenever her levels drop too low, a nurse is notified, and Pink P has to use supplemental oxygen. As long as pulse ox readings are consistently below 95% (awake) and 90% (asleep), you can't leave the hospital. There is no get-out-of-jail-free card. You just have to wait and try not to obsess about that little number.
Nasal oxygen cannula:
Supplemental oxygen comes through a nasal cannula--a little tube that is wrapped around the head and placed into the nose. You can imagine how much Pink P doesn't like this thing. It's uncomfortable, and it smells funny, and every time she moves, it comes out (unless they tape it to her face which just seems cruel). Every time it comes out or she removes it, her pulse ox drops and the nurse shows up. Sometimes the nurse is not happy to see us. We've had the biggest screams/cries at the hospital over nasal oxygen.
Medication doses and frequency:
Figuring out the medicine protocol for a kid with asthma requires a graduate degree. At least, this is what I assume since the instructions read like a GRE logic problem. There are a lot of if...thens involved when dispensing this medicine. If your child is in the yellow zone, then use X two times, ten minutes apart. If she is in the red zone, then use Y instead. Pink P left the hospital this time with five different medicines prescribed to her. That's a lot to keep track of! My favorite is the steroid. The instructions on the bottle read: "Take 6.7 ml every day x 2 days, then 3.3 ml x 2 days, 1.7ml x 2 days, 0.8 ml x 2 days, then stop." I don't know about you, but none of the spoons or syringes we have for dispensing medicine is that accurate.
Kids under the age of five take most of their asthma control medicines through a nebulizer. I think it's awesome that we live in a day and age when Pink P can get these breathing treatments at home with her very own, very cute seal-shaped nebulizer. Pink P does not share my sentiments. The nebulizer slows her down and cramps her style. Sometimes the treatments can last more than 20 minutes. This means she has to remain in one place for 20 minutes. This wouldn't be so bad if it were only on occasion, but sometimes she has to have these treatments 3 to 5 times a day. To add insult to injury, the mask usually messes up her hair and the steam coming out obscures her view of the television (which is pretty much the only way I can get her to endure the treatments. Thank goodness for PBS Kids On Demand!) This time around in the hospital, I learned that the solution she has to inhale is salty, and the salt burns her lips which are already chapped from the dry hospital air. Note to self, the next time we go to the ER, take lip balm!
The medicine that is being inhaled through the nebulizer can cause restlessness, irritability, nervousness, and heart palpitations. In other words, it's a stimulant. There is nothing like a preschooler on speed. Nothing.
I obviously don't have it all figured out, but this is life with asthma as I see it today!
12.21.11 Update: There may be hope after all. Our new pediatric pulmonologist tells me that if we can get Pink P's preventative meds dosed right, we may actually avoid emergencies. That'd be awesome. She also burst my bubble of denial by pointing out that a near-constant cough, three trips to the ER, two hospital stays, and repeated need for steroids means this is not a mild case of asthma.