New Monster in Town?

Where to begin with this entry. I've come on here several times and started to write but shut it down. How do I write anything after "Losing Me?" It was upbeat, so happy and full of life. This post is not any of those. It's okay though I'll get back there eventually, but right now it's not very sunny in my world. It is mostly cloudy with occasional downpours. I'm trying to be fine and life is going on around me with good things here and there, but inside my heart is cracking. The sunshine isn't always going to be there and the doom finds you. It finds everyone at different times throughout their life, because that is life. No one escapes its cruelty, hardship and unfairness. No one. Maybe you can hope your doom will be better than someone else's but it'll still be doom.

I started this blog to be real with people. Anyone can do the fluffy stuff and pretend all is dandy, but not everyone can be real. Discuss the things people don't want to admit or talk about because someone told them they should find the good in everything. Someone told them they shouldn't talk about the bad things because their life could be worse. Guess what? Anything could be made worse and before you find the good in something, it's okay to acknowledge the ugly bad that's staring you in the face. This blog is for those of us who admit our misfortunes. Throw a good tantrum about them. Wipe off the snot and tears on our shirts, clean up the mess, make a new plan, and come out of it disheveled but tougher. Some negativity is bound to set in and being a mad warrior is better than being a sobbing one who gives up on the battlefield. Or worse, the idiot that runs around smiling pretending they're not really in a battle and there really isn't an arrow sticking out of their thigh, because they're trying too hard to stay positive. 

I think a certain amount of madness has to be there so you can fight on and be the hero. As the mom you get to be your child's first hero. We completely take care of them better than anyone else can. Mom's also have a kind of magic to their being. We can simply cradle our babies, softly tell them they'll be alright, kiss their owie and make it all better. Just like that. But asthma messes with my mommy magic. I guess that means I have to be more creative. How I wish I had some powerful magic to make it all better for good. 

Where is this entry going? 

I'm getting there, but first let's get you up to speed. For starters, we lost the trial run without Singulair. We made it one month, ONE, and a virus hit. After all this time it still shocks me how one little cough quickly turns into terror. Everything is fine one minute and the next I feel the panic, anger and frustration as I realize the doom is hitting. I grab for the phone, make the call, start up the emergency meds and we enter into asthma flare-up mode, which is a form of Hell for all of us. A Hell I've gotten used to somewhat, but a Hell nonetheless. So, instead of two maintenance meds, Calvin's veins are pumping with Flovent, AND Advair at a doubled dose, Flonase, Singulair, Benedryl, Albuterol and the dreaded Orapred. Our goal, my bright idea blew up in my face. Turns out Singulair is magic for him even if it causes unwanted side effects, it saves him from the Orapred. Singulair really is the lesser of two evils, even if there are behavior issues, because wouldn't you know breathing ends up being more important. Yes that was sarcasm.

I want to scream, I do scream in my pillow or when I'm by myself in the car. It's ridiculous but necessary. The way I see it, it's my warrior cry. I am fighting a monster that occasionally attempts to kill my child, therefore occasionally I need a good scream while I fight for Calvin's survival. Dramatic I know, but there is nothing calm about my child struggling to get enough air, or seeing him struggle to thrive. It takes all I have to be calm and cool during these rough patches. They're ugly, defeating and they most definitely suck.

But like I said, I am somewhat of a warrior and I don't plan on letting the monster kill me or my kid. So fight on we will. Bring out a new blueprint and let's start over. The new plan goes like this... Singulair is back, Singulair wins my friendship but we needed something better because Calvin's body can't be run on all these meds and because of that we turned to surgery. The tonsils and adenoids came out three weeks ago. That ordeal scared me but he actually did really well. Leading up to the surgery was difficult because apparently asthmatics need two pre-op appointments. One with their pediatrician and one with their specialist. Then they have to go on Orapred for three days before surgery to ensure the airways stay open during the operation (talk about heightened anxiety with that bit of knowledge). We had to bubble Calvin up and he missed a lot of school but I did enjoy extra snuggles and time with my boy. We made it to surgery, he came through it and did well enough recovering.

Sounds like things are finally getting better right? I thought so too, then I got hit in the face with a burrito. Now it appears there could be a new monster in town. And this guy's worse than the one we've already got messing up our life. He's sneaky and evil and nobody seems to know much about him which makes him even scarier. His name is PCD. 

Just before the surgery I got an email from my best friend. I love that girl. Anyways, she had come across an article on Primary Ciliary Dyskinesia (PCD for short) that made her think of Calvin. She also sent me a link from the American Lung Association with further information on the signs and symptoms of this rare disease. When I started reading about PCD I realized I had already heard about this. Calvin's ENT had mentioned testing him for it on our first visit. I wasn't well informed yet and it sounded scary, but I didn't know her well enough to know if I should take her seriously, so I sort of disregarded it and focused on the surgery. 

Why did I initially ignore PCD? For a couple reasons... it's scary to think about, there are more tests involved, one of which is a ciliary biopsy, then there's a nasal nitric oxide test and genetic testing. More tests mean more money. More medical debt on top of medical debt. Besides, prior to the ENT, no doctor had ever mentioned this to us and she'd happened to mention it on our very first office visit. I didn't know if I could trust her yet. Looking back she is a brilliant doctor and her thought to rule out this rare disease is very valid. The longer someone with PCD goes undiagnosed, the worse the condition gets and here's the scary word, it is degenerative. That word stabs me in the chest. To give you a briefing, a person with PCD has a problem with the cilia in their mucous membranes. Their body has a hard time clearing out mucus and debris causing difficulty breathing and recurrent illness. Over time it damages the trachea, lungs and sinuses. This is a newer disease so diagnosing it isn't easy, it isn't on all doctor's radars either and there are a lot of people walking around misdiagnosed. It ends badly for them, with lung transplants and/or respiratory failure. 

If Calvin ends up having this PCD, the treatment plan would be more invasive and costly on a daily basis. The whole thing is just a lot scarier than asthma. If it's just asthma, Calvin could still die from respiratory distress/failure when he gets sick, BUT at least what's happening in his body wouldn't be degenerative, and that makes it easier. Now throw in PCD and there's damage happening every time he gets sick. In any case, there is no choice in how we proceed. Calvin's history, severity and atypical asthma have always screamed, "are we missing something?" We have to get him tested for this PCD. It has to be ruled out and I couldn't live with myself if I didn't make sure. I can't simply ignore it. Up to this point I've hated asthma but now more than anything I'm hoping that's all he has. 

Sure, it could be worse. I didn't lose my child in the Oklahoma tornado and he does not have cancer. But he could still die from asthma and he could definitely die from PCD. Should I go there? No. But it's a reality that's there for him more than it is for your garden variety "normal" child. Calvin seems so normal. He can run around on the playground, he's smart and witty. But underneath that handsome, sweet and funny boy is a very dysfunctional respiratory system messing everything up. I feel we're so close to normal sometimes and yet so far away. Normal is right there, he's playing, laughing and looks completely fine. Then normal is slipping right through our fingers as my boy gets sick again, and again, and again. I could lose him one of these times and it hurts to go there but you can't always stop your mind from going where it will. It's a kind of cruel taunting. It's like the proverbial roller coaster ride, except ours isn't in the best shape and I can't help but wonder if there's any track on the other side of the hill. We're mostly retching in our seat screaming to get off. I want stable and I want the asthma monster gone but as we all know from watching Dexter, there will always be monsters. Some are worse than others.

While I wait for these tests and the subsequent diagnosis, I sit here wishing I could choose the monster. As much as I hate asthma, it is a less destructive monster than PCD. But whatever monster we end up dealing with, we WILL take it on and do everything we can to subdue it.

We've come through some really bad stuff with Calvin. We'll go through more bad stuff, it's how it is. Monsters don't play nice and they're very sneaky. I honestly do believe when things are good, when the sun is shining, I know it right away and I cherish it. Without the monster lurking in the background, I don't think I would have cherished a normal day. I would've looked for something much fancier. When all I want now is for my little boy to breathe easy. However that needs to happen, so be it.

The Monster Stirs

Another sleepless night. I've had more of these than I care to think about. It begins with one little cough and the monster stirs. 

I hear it. I hear that cough. My stomach turns, my heart stops and fear invades my mind. Calvin has a virus. The coughing fits began while he was trying to fall asleep last night. We started the cool mist humidifier and Vicks Vaporized his chest. Propped him up on pillows and hoped for the best... which at this stage in the game, is quite frankly, stupid. We've dealt with this monster for six years now. Hoping for an easy virus when your child has asthma is like hoping poop won't smell. In those six years, sure we've had some milder colds but none so mild as that of a normal child. 

Ariauna was angry this morning when she found out her brother would be staying home from school because he's sick. She knows what's coming and doesn't like it any more than the rest of us do. There will be no playing at the park after school for a couple of weeks, the fun times will be limited. She knows Calvin will get a lot of attention and herself very little. I get the question again, "why does he get sick all the time?" I explain it again, while trying to comfort her. I hate what this monster does to him, to her, to our family. 

We all know what an illness will do and we feebly hope it will take two weeks instead of three. I hope for four hours of sleep at a time instead of one or two. I hope for no steroids, no barfing, no pneumonia, no hospital. I beat myself up asking, how did this happen, what did we miss, what did we do wrong, what can we do better? How much it disrupts our life makes me angry. I want normal. I want fair. 

Most people are fooled by Calvin's appearance. He can seem so normal, healthy and just fine. But you don't know what goes on behind the scenes to make this happen. You are also unaware of what occurs when he does crash, when the monster is awakened because our family will disappear into our home for weeks on end. A so-called bubble is formed and we're very careful. We fight to get the monster stable. Once that's done, then we spend time giving his body a chance to recover before we throw him back in the cesspool of germs, or he's bound to catch another virus immediately. 

I have turned into someone I don't like. Panic, anger, sadness and frustration set in all too quickly. I have become the hand washing nazi and a germaphobe. If we're out and about, and I see someone with the sniffles, hear them cough or hear that they are ill with something, I feel the rage welling up inside me as I take Calvin and run.

Normal families are rarely bothered by an illness. Their normal child will get a virus, it will run it's course with minor symptoms and will not last for weeks on end. They think nothing of bringing their sniffling child anywhere and why should they. To them, it's a runny nose but to me it's a looming threat of pneumonia. Few can relate, even the closest of family has a hard time grasping the severity of something so small as a runny nose. Not even when I describe to them in detail just how awful an illness with Calvin can be. I don't think it's mentally possible for other people to fully understand until they themselves have a child struggling with asthma. We are all too often alone and isolated with this monster. 

Sometimes it gets the better of me and I foolishly wonder how different our life would be if my child had a set of normal lungs. Simple play dates, birthday parties, school, church, any kind of outing would be what it's supposed to be, normal and/or fun. Instead I look for potential hazards and curse a slip of an unwashed finger in the mouth. I have to keep strict rules, like no sharing drinks or food. Wash, wash and wash your hands. Keep your fingers away from your mucous membranes, the eyes, nose and mouth. Is it fair they should have to care so much about germs, about their mucous membranes?

I used to think that I had to be especially careful during flu season but during a recent visit with Calvin's Specialist it dawned on me there is no such thing. The Specialist was saying how we're not going to try wean him off any meds because flu season is upon us. I told him I don't believe in that anymore. I think it shocked him a little. I said it doesn't matter what time of year it is, if you check the charts Calvin has been sick with serious illnesses Winter, Spring, Summer and Fall. The flu season (October-April) has not applied to my child. I also wanted to blurt out my lack of hope for ever weaning him to a lower dose of meds. Why? We've tried this many times, only to find that we can't. Dosages have only ever been increased. But I refrained from showing just how much faith I have lost in them (them being doctors). 

Asthma is a monster. We've had to adjust our lives around it and live with it. Taking every step we can to manage and control this unstable creature. We sedate it with medication, but every so often, the bad fairies (the germs) sneak in and wake the monster with powers of an ugly kind. So, our battle continues. We keep trying new things and do the best we can, hoping one day this monster will leave. Puberty is now the new age, in which the doctors think Calvin will outgrow this. It used to be age five, but that has passed us by. I long for the day I can think of "normal" as a gift to be cherished.