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.

Holding an Umbrella

I brought Calvin in to see his asthma Specialist last week, because I thought I had finally broke the code to managing the monster. All I needed was the green light to move forward with the new and improved treatment plan. The simple thought was to remove the drug Singulair, add Zyrtec, and replace Flovent with Advair. Simple right? No, I am not that lucky.  

Now why would I want to take him off Singulair, the only drug that stops the body from having an allergic or triggered asthmatic response? The drug that prevents mucus from clogging the head and the chest. The drug that is better than your regular antihistamine. I won't bore you with the scientific details, you can google it. Just know that it's a drug in a class of its own, very effective in treating allergies AND asthma. BUT this unique drug comes with a known side effect. It can cause aggression and behavior problems, which is something we've seen in Calvin and have suspected Singulair to be the dark passenger. We had done a trial of our own when Calvin was four, without the doctors approval for two reasons. The drug was expensive (no generic at that time) and we wanted to see if his behavior would improve. It did. We had three excellent months until he got pneumonia, and then we were blamed because we'd taken him off of Singulair without approval. Breathing is more important than behavior. Understood. However, he's in first grade now and aggression doesn't fly in school. Since Calvin has actually been in a somewhat stable place for the last six weeks, experimenting again is an option. I'm just going about it the right way this time. 

Now for the maintenance steroid inhalers. Swapping out the Flovent for Advair seems like a no brainer because the drug is seriously a magic potion. When Calvin inhales this, it's as if he doesn't even have asthma. He is six years old, so he can and has taken it during a respiratory illness, so why not on a regular basis? I'll get to that in a second. First, what makes Advair better than Flovent? What it comes down to is higher concentration, so it's a stronger dose of steroids. Two puffs of Flovent is equivalent to one puff of Advair, with the addition of another drug (the secret ingredient), which is what makes it magical unlike the Flovent. Now when Calvin is sick, he's taking three to four puffs of Flovent, so it only makes sense to switch to Advair anyways. Not so. Apparently this drug is for adults, it's an adult dose. In children, it has been known to cause stunted growth. This has already been a concern for us. Calvin has been in the 10-30th percentile for height and weight, since he was a baby. He hasn't ever hit average. A child struggling with a chronic disease cannot grow properly because all their energy is being used to stay alive, not grow. If you find the right balance of meds and stabilize their condition, that child will be able to grow. However, if you overmedicate, the steroids will prevent growth and cause a host of other problems. 

My green light was NOT simple after all, it would bring the high potential for ugly consequences. It feels so much like a bad game. I'm trying to win but my crappy cards are making that difficult. Yet I refuse to lose, so how do I cheat this monster? There is nothing simple about changing around meds. If I make the wrong move, I could easily hurt my child, if I don't move at all, I hurt him too. Any way I choose, I feel screwed because that is what chronic diseases do, they screw with your life. We're stuck with making tough decisions. Should we try it for a couple months and should it work then what? We'll risk him being shorter and having the complications that come along with being on a higher dose of steroids? Or do we go back to the behavior problems and more frequent/dangerous respiratory illnesses?

I want to cry and I can't. I'm too angry, hurt and overwhelmed to cry. I want to fight this beast for good. Everyone keeps saying, he'll grow out of it. I've heard this for so long and it's just a faint hope inside me. It should happen, I hope like crazy it will happen but for now, for now it's scary and it hurts like Hell. This could all blow up in our faces. If he gets ill and doesn't pull through it well enough, then we have to put him back on Singulair. So, I guess we just wait and some of the answers will make themselves known. I hate waiting and wondering. Either way this goes we're stuck with the consequences and I don't know that there is a lesser of two evils to be found. It's easier when the choices are taken away from you, going out on a limb to experiment is much harder. Especially when you're playing with the breath your child takes. 

Here's the worst part of all this, he's becoming more aware of what's going on. The things being said and he's afraid. Who wouldn't be? Now I have a whole other challenge to deal with. I need to be calm, to keep him calm. I need to be strong but I'm barely keeping the fear at bay myself. While the Specialist and I were talking, Calvin interrupted with a frightful voice, about to burst into tears. He was panicking over the big words the doctor was using like "chronic diseases." Recently, Calvin has become very afraid of death because he knows people have died from complications of asthma. I grabbed him and put my arms around him, all the while biting the inside of my cheek to stop myself from losing it. I reassured him, he's going to be fine, we're here, trying to make him better. I haven't let him die and I don't plan on letting asthma win. I know those words are scary but the Specialist and I are taking good care of you. Calming your child when you feel like a bomb is about to explode inside yourself, is next to impossible. But as hard as it is, you have to make it happen even if that means biting your cheek so badly it bleeds. Later on when you've locked yourself in your bedroom alone, you can shove your face in a pillow and have a good scream. You do not let your child see or hear your fear. You don't get to be selfish with their chronic disease. You have to be strong for them.

I need to clarify something. Past entries may seem like I'm disappointed with the doctors. Sure there have been frustrations and disappointments but they aren't perfect, and they can't be, especially when they're dealing with imperfect chronic diseases. I feel so much love towards Calvin's Specialist because he's stood by us all these years and gotten us through the worst. He knows us, he cares and he's there 24/7 with his cell phone. He's the hero in our story, saving my child over and over again and complimenting me on several occasions for knowing my stuff. He has said I'm an honorary asthma specialist. Hearing a doctor tell you, you're doing a good job, is a huge relief. As a mother you stress practically every second about what you could be doing better for your child. Give them a chronic disease and the mother feels like a failure. 

To sum this all up, we've decided to put my plan into action for up to three months. We wait and we decide as the pieces fall. Calvin has finally been in a good place since mid-January, so this is a perfect time to play around with the treatment plan. In the meantime I'm trying to deal with the uncertainty, the risks to my decisions. This is not my forte, I like to be in precise control. I hardly let my guard down, I rarely enjoy our kind of normal because I've forgotten how to. Someday that will come back, but right now I'm haunted by the scares we've had in the past. When you've tried your hardest only to watch things fall apart in an instant... It takes a long time and maybe never, to recover from that terrifying feeling. So, it's hard for me to actually enjoy when the sun is shining in our world. Instead, I stand like a fool holding an umbrella in the sunshine, waiting for the rain. The rain that could be months away. This is my struggle and all struggles come to an end at some point. I am hoping for a happy ending, one in which he grows up strong physically as well as emotionally, from all he's had to go through as a kid. We deserve that happy ending. Only then, will I fold up my umbrella.

Cup of Coffee for my Asthmatic Child

This morning I woke up to find that my six year old boy had gotten the coffee ready for us (him and me). He didn't fly solo though, he took instructions from his dad and followed them to a T. He measured and poured the water, scooped four tablespoons of grounds into the fresh filter and had it all ready so all I had to do was flip the switch when I came downstairs. My sweet boy hadn't done that yet because he wanted to wait for me. 

He started drinking coffee around age two. Calm yourself... It is only half a cup, once a day and has hazelnut or french vanilla liquid creamer added to it. How it all started, you ask? One morning way back when, he wanted a sip of what his mommy was drinking. I gave him some and he wanted more. While most people would have said "NO," I said "sure!" 

I had heard that coffee can be beneficial to anyone with asthma and that children under the age of twelve can experience an opposite effect to caffeine and Benadryl. How caffeine effects him is hard to say. I wouldn't say he is any more wild because of it. On the other hand, we have noticed that when we've given him Benadryl, which knocks me out cold, he becomes absurdly hyper. But that's a topic for another time. Anyway, you can see I had given the caffeine and coffee quite a bit of thought before he ever asked and I agreed. 

I did some further research on caffeine before I let coffee become our little ritual and as it turns out, coffee is indeed good for the airways. It can never replace a prescribed maintenance medication but it can give a little extra help for the lungs, especially when asthmatic symptoms flare-up. LIVESTRONG had a good article describing the beneficial effects of caffeine on asthmatics.

Now, Calvin was diagnosed with asthma at the tiny age of five months old and he has earned the status of “SEVERE” asthma on his medical file. There is nothing regular about his case and never has been. I knew in the early stages of his infancy there was something not quite right about his breathing. He would grunt a lot, choked on milk at almost every feeding and he wouldn’t take a pacifier or his thumb. He slept best at an incline on my chest or in his vibrating seat. He was constantly getting colds that would turn into pneumonia, turning into hospitalizations. Getting a doctor to listen was next to impossible, that is until he almost died from a bad case of pneumonia. 

Being a parent to a child with asthma is more than hard. The fact that I found something to make it a tiny bit easier is magic. I share a cup of coffee with my boy almost every morning. It's our special time, our thing, just my baby boy and me. It smells good, tastes good, it's warm and helps him without being an expensive-toxic-chemically-enhanced pill, a cumbersome breathing machine, or inhaler. In fact our favorite place to go together, our happy place, is Caribou Coffee. This isn't normal, I am fully aware of that. I would never dream of giving my healthy daughter coffee. However, our life has never been nor will ever be "normal" when asthma is star of the show. 

Ultimately, Calvin loves coffee and I know it benefits his condition. I will gladly supplement my child’s asthma regiment with coffee any day than have to use the rescue meds more frequently. Some people shake their head at me but I shake my head back. To these people I say... you don't know me or my child, or what we’ve gone through. You haven’t been there when harsher forms of treatment are used. When I’ve had to watch every limb of my child’s body shake. When I’ve had to try and tame the wild beast on an ADHD+PMS like roller-coaster, who used to be my sweet child. When I’ve held him helplessly in my arms and felt his heart pounding so fast it seemed as if it were going to explode. Then dealing with the aftermath of using a systemic steroid, seeing how it weakens the immune system so for months out he is sick with illness after illness. 

What I have described are the side effects of using rescue meds like Albuterol and Orapred (systemic steroid). Yes I use them when I have to and I’m grateful for them, BUT only when they are absolutely necessary. If I can get away with managing his asthma on a low dose of Flovent (an inhaled steroid maintenance medication), a dose of Singulair and some coffee, well then, I consider us lucky. 

If you take anything away from this post, it should be... When you have an asthmatic child, giving them a small cup of flavored coffee is a treat, as well as a treatment. People argue that caffeine is harmful to children. I argue that the drugs, the steroids in particular are of much greater harm than a little caffeine could ever be.