So, I'm still here at home, completely tired, with my sick kid. I really don't want this to be another sick kid site. I've been reading a lot of sick kid sites at 3am as I sit with my boy in the dark when he's trying to breathe. These are poignant, sometimes devastating stories. They make me question my faith. Our situation at home makes me question the reasons that children should suffer. Does anyone have a good answer for that? I haven't heard many that move me.
This whining isn't what I want to do here. I'm trying to be normal, to think of stories to tell, but my mind is right here, with my boy. Do you want to know about viral-induced asthma? I can tell you about that, the pharmaceuticals, the signs of distress. I can tell you side-effects and benefits of different drugs. Usually being able to breathe is the big one. I like that one.
For us, viral-induced asthma is that we have a really healthy boy most of the time. He is vigorous, athletic and seldom needs his rescue inhaler (Xopenex) when he's exercising. Sometimes running through dust (like on a baseball field) will get to him. He takes a daily inhaled steroid, Advair or Flovent, usually after he brushes his teeth and as he's running downstairs with his backpack to catch the bus. He looks healthy, with round pink cheeks and a gleam in his eyes.
Yet, when my boy catches a cold or the flu, his lungs will get irritated and suddenly, we're faced with a full-fledged medical emergency. We used to run to the ER every time he couldn't breathe well, but these days, we monitor oxygen levels, heart rate, and peak flows (how fast his lungs can move air) at home. One doctor told us that we have an emergency room right here and only needed to get advice when his breathing problems surpassed the doses we were instructed to give. About a year later, another doctor told us that our boy did indeed have pneumonia again, but that he'd be more comfortable at home. That was the first time I realized that I might accidentally give my boy toxic levels of his medicines at 4am because I was so sleep-deprived. Have I told you this before? It is my biggest fear during these ten-day marathons of not sleeping much. Last week, my husband was sitting on the edge of the bed, wearily getting dressed for work and said "It's too bad they don't have a hospital where you can drop your sick kid off for 8 hours, just long enough to get a good night's sleep."
When my son's really struggling to breathe, he usually has a wheeze that I can hear without a stethoscope. My husband is good with a stethoscope and usually can tell me "he's a little junky in the lower right lobe" when he's having problems. He describes it as a crackling. The problem is that when it's completely closed, there's no air moving and it gets quieter rather than louder. I'm just deaf enough that I can't hear much besides a heartbeat or hearty bowel sounds when I listen through a stethoscope. Maybe that's just an excuse. I don't know. I feel like I could miss something if depended on using them.
There are other ways to tell that my boy's in distress. When he's having serious problems breathing, his ribs do this thing called retractions. The tiny muscles around the ribs will contract with each breath. It looks like someone trying to impress me by contracting their abs, only higher, by the ribs. We also use an oxygen sensor that my husband bought online. When his oxygen levels get below 90%, we head off to the hospital. The doctors gave us a mechanical meter for testing peak flow. My boy has to stand up and, without coughing, blow as hard as he can through it. It measures how fast his lungs can move air. The numbers go way down when he's in distress. We write these numbers down in his medical journal along with the medications that we've given him. Most of the time, we can see an improvement in his peak flow before and after a breathing treatment. I'm also pretty good at telling by my boy's energy levels. He's an active kid and the steroids get him pretty jazzed up. So when he's on all of that and he's listless anyway, I'm paying attention, getting my husband to listen to his breathing, checking his oxygen level, and his peak flow. It's different, somehow, than general fatigue. I'm not sure what that difference is. It just is.
Here are the drugs with which I am familiar:
Xopenex - a refined form of Albuterol, a rescue inhaler. Chemical structures of the same name frequently come in a left and right version of each other, mirror images. Albuterol has both left and right chemicals, whereas Xopenex has only one (I forget if it's left or right). Xopenex gives better results opening the airways and has fewer of the undesired side-effects of jitteriness and high heart rate. That said, a good dose of Xopenex will still raise a kid's heart rate and cause some tremors. We watch his heart rate, especially since he's also on other inhaled steroids, like Advair, which also increase heart rate. It took a while for me to know what a normal heart rate was for my boy, but now that he's older, it's almost the same as an adult's. We've found that Xopenex is much more effective if delivered using a nebulizer instead of an inhaler.
Adrenaline - a naturally occurring chemical also known as epinephrine. When delivered naturally by the brain to parents due to external stimulus such as a sick child with asthma, adrenaline can help us stay awake for long hours, even days at a time with catnaps in between. Adrenaline helps a mom or dad to think more clearly when in an emergency situation, but at our house, we keep a notebook of medications and times administered anyway. It can also prevent us from sleeping when the immediate reason for its release has been completed and the emergency is over. When my boy gets better and the adrenaline wears off, I frequently sleep for ten+ hours a night for a few nights in a row.
Prednisone - an oral steroid. When my boy was smaller, they gave him Prednisolone instead. I'm not entirely sure what the difference is between them. Prednisone and Prednisolone open airways restricted by inflammation. It also affects appetite and frequently, our boy is not able to figure out, after having a round of Prednisone, when he's full and should stop eating. It seems like there's a guaranteed weight gain with every round of Prednisone. Breathing vs. weight management. We have always opted for the breathing. Prednisone may also have side-effects if it is stopped abruptly. I don't know what they are. The doctors always taper the doses as my boy gets better. One year, his asthma wasn't under control and the doctor said that if he had any more rounds of the Prednisolone, he might have a temporary loss of growth. It was true. My son didn't grow for a year, but he seems to have made up for it. There are only three kids in his class taller than he is. He does have the round face typical of someone who's been on steroids and it's not surprising that he has a weight issue. The doctors say that he might outgrow this in his teens. We'll see. We still opt for breathing over weight management.
Singulair - We used to be big fans of Singulair, a daily pill. It opened airways and could be used with a rescue inhaler. It helped us get off the Prednisolone wagon for a while. We stopped giving it to him, though, when he started having serious depression and aggression. Those side-effects stopped as when we stopped giving him the Singulair. It was a bummer because Singulair really helped with his breathing.
Advair and Flovent - inhaled steroids, but not rescue inhalers. We use Flovent when our boy is well and Advair the minute he starts to get sick. We see a definite improvement on the number of times he needs a rescue inhaler when he uses Advair or Flovent. Xopenex and Advair can be used together, though at higher doses, we separate them by about an hour to keep our boy's heart rate under control. We don't see any other side-effects to them, but he's been on them so long now, how could we? It doesn't seem significant in any case.
Flonase - yet another steroid used for inflammation, but for the sinuses. This one helps our boy to keep a sinus drip from going down into his lungs and causing bronchitis or pneumonia. When it's used together with nasal rinses, it's really prevented his issues from becoming emergent. Sometimes, our boy gets nose-bleeds now that he's on Flonase, but they're minor and they get him lots of sympathy from the girls, the cool gross-out factor from the boys, and he gets to go down the hall to the school nurse. The school nurse loves him.
Cefdinir - an antibiotic that's used for bacterial pulmonary infections, sometimes called secondary infections. Hopefully, this will work for him this time. (Who names these medications? I tell you, the pharmaceuticals should have a talk with the car companies about naming their products.) We've had good results with Cefdinir.
Azithromax - another antibiotic used for these secondary infections. It has the benefit of taking only five doses with a ten-day effect. Our boy has never responded to Azithromax. We finally put it into his notebook so we won't try it again. So whatever bacteria he's growing, it's already resistant to Azithromax. This is a very good reason for all of you out there to remember how important it is to take ALL of your antibiotic once you've begun taking them. If you take a little and then stop, you're actually growing a stronger bacteria, teaching the little suckers how to survive the antibiotic.
Formoterol - We were prescribed formoterol fumarate for our boy just once a couple of years ago. For the next 48 hours, he had a very high heart rate, 140% of normal. Ironically, my husband was prescribed the same thing, Symbicort, within a month of my son's problem with it and he had the same response. Boy those were a tough couple of days. We had to strike that one off our list for good. The way I figure it, my husband and my son share enough similar DNA that an adverse response like this doesn't surprise me.
Right now, my son is on five different medications that we administer to him seven times a day. Four of those are given through a nebulizer, a compressor that blows bubbles through the liquid medicine so it can be breathed in like steam (except that it isn't warm). My boy is very patient sitting there for ten minutes each time. I wish I could tell the people that design these things that he still uses the little dragon mask that they gave us when he was younger. In the doctor's office, they keep trying to give us the thing that he has to hold in his mouth, like a pipe. Who wants to hold a pipe in their mouth for ten minutes four or five times a day when you can relax and use a mask, playing video games the whole time?
I try to let my husband sleep during the week because he still has to go to work, but he takes over when I don't get enough sleep during the day and I hit the wall. Sometimes, we're both awake because we're worried and our boy is lying there snoozing away. This morning, I woke abruptly, hearing what sounded like a dove call, very quiet among the ambient house sounds. It was my son, moaning in his sleep. So, I can tell I'm still on the adrenaline ride. Even talking about it sometimes, I get a shot of adrenaline. So, at night, when I can't sleep because my heart can feel its effects, I read blogs. Sometimes I still read the sick kid sites. They make me cry, but if it's 3am and it feels like just one other mom is up somewhere in the world, doing just what I'm doing, it helps. We are listening to our babies breathe.
Thanks for listening, jb
This whining isn't what I want to do here. I'm trying to be normal, to think of stories to tell, but my mind is right here, with my boy. Do you want to know about viral-induced asthma? I can tell you about that, the pharmaceuticals, the signs of distress. I can tell you side-effects and benefits of different drugs. Usually being able to breathe is the big one. I like that one.
For us, viral-induced asthma is that we have a really healthy boy most of the time. He is vigorous, athletic and seldom needs his rescue inhaler (Xopenex) when he's exercising. Sometimes running through dust (like on a baseball field) will get to him. He takes a daily inhaled steroid, Advair or Flovent, usually after he brushes his teeth and as he's running downstairs with his backpack to catch the bus. He looks healthy, with round pink cheeks and a gleam in his eyes.
Yet, when my boy catches a cold or the flu, his lungs will get irritated and suddenly, we're faced with a full-fledged medical emergency. We used to run to the ER every time he couldn't breathe well, but these days, we monitor oxygen levels, heart rate, and peak flows (how fast his lungs can move air) at home. One doctor told us that we have an emergency room right here and only needed to get advice when his breathing problems surpassed the doses we were instructed to give. About a year later, another doctor told us that our boy did indeed have pneumonia again, but that he'd be more comfortable at home. That was the first time I realized that I might accidentally give my boy toxic levels of his medicines at 4am because I was so sleep-deprived. Have I told you this before? It is my biggest fear during these ten-day marathons of not sleeping much. Last week, my husband was sitting on the edge of the bed, wearily getting dressed for work and said "It's too bad they don't have a hospital where you can drop your sick kid off for 8 hours, just long enough to get a good night's sleep."
When my son's really struggling to breathe, he usually has a wheeze that I can hear without a stethoscope. My husband is good with a stethoscope and usually can tell me "he's a little junky in the lower right lobe" when he's having problems. He describes it as a crackling. The problem is that when it's completely closed, there's no air moving and it gets quieter rather than louder. I'm just deaf enough that I can't hear much besides a heartbeat or hearty bowel sounds when I listen through a stethoscope. Maybe that's just an excuse. I don't know. I feel like I could miss something if depended on using them.
There are other ways to tell that my boy's in distress. When he's having serious problems breathing, his ribs do this thing called retractions. The tiny muscles around the ribs will contract with each breath. It looks like someone trying to impress me by contracting their abs, only higher, by the ribs. We also use an oxygen sensor that my husband bought online. When his oxygen levels get below 90%, we head off to the hospital. The doctors gave us a mechanical meter for testing peak flow. My boy has to stand up and, without coughing, blow as hard as he can through it. It measures how fast his lungs can move air. The numbers go way down when he's in distress. We write these numbers down in his medical journal along with the medications that we've given him. Most of the time, we can see an improvement in his peak flow before and after a breathing treatment. I'm also pretty good at telling by my boy's energy levels. He's an active kid and the steroids get him pretty jazzed up. So when he's on all of that and he's listless anyway, I'm paying attention, getting my husband to listen to his breathing, checking his oxygen level, and his peak flow. It's different, somehow, than general fatigue. I'm not sure what that difference is. It just is.
Here are the drugs with which I am familiar:
Xopenex - a refined form of Albuterol, a rescue inhaler. Chemical structures of the same name frequently come in a left and right version of each other, mirror images. Albuterol has both left and right chemicals, whereas Xopenex has only one (I forget if it's left or right). Xopenex gives better results opening the airways and has fewer of the undesired side-effects of jitteriness and high heart rate. That said, a good dose of Xopenex will still raise a kid's heart rate and cause some tremors. We watch his heart rate, especially since he's also on other inhaled steroids, like Advair, which also increase heart rate. It took a while for me to know what a normal heart rate was for my boy, but now that he's older, it's almost the same as an adult's. We've found that Xopenex is much more effective if delivered using a nebulizer instead of an inhaler.
Adrenaline - a naturally occurring chemical also known as epinephrine. When delivered naturally by the brain to parents due to external stimulus such as a sick child with asthma, adrenaline can help us stay awake for long hours, even days at a time with catnaps in between. Adrenaline helps a mom or dad to think more clearly when in an emergency situation, but at our house, we keep a notebook of medications and times administered anyway. It can also prevent us from sleeping when the immediate reason for its release has been completed and the emergency is over. When my boy gets better and the adrenaline wears off, I frequently sleep for ten+ hours a night for a few nights in a row.
Prednisone - an oral steroid. When my boy was smaller, they gave him Prednisolone instead. I'm not entirely sure what the difference is between them. Prednisone and Prednisolone open airways restricted by inflammation. It also affects appetite and frequently, our boy is not able to figure out, after having a round of Prednisone, when he's full and should stop eating. It seems like there's a guaranteed weight gain with every round of Prednisone. Breathing vs. weight management. We have always opted for the breathing. Prednisone may also have side-effects if it is stopped abruptly. I don't know what they are. The doctors always taper the doses as my boy gets better. One year, his asthma wasn't under control and the doctor said that if he had any more rounds of the Prednisolone, he might have a temporary loss of growth. It was true. My son didn't grow for a year, but he seems to have made up for it. There are only three kids in his class taller than he is. He does have the round face typical of someone who's been on steroids and it's not surprising that he has a weight issue. The doctors say that he might outgrow this in his teens. We'll see. We still opt for breathing over weight management.
Singulair - We used to be big fans of Singulair, a daily pill. It opened airways and could be used with a rescue inhaler. It helped us get off the Prednisolone wagon for a while. We stopped giving it to him, though, when he started having serious depression and aggression. Those side-effects stopped as when we stopped giving him the Singulair. It was a bummer because Singulair really helped with his breathing.
Advair and Flovent - inhaled steroids, but not rescue inhalers. We use Flovent when our boy is well and Advair the minute he starts to get sick. We see a definite improvement on the number of times he needs a rescue inhaler when he uses Advair or Flovent. Xopenex and Advair can be used together, though at higher doses, we separate them by about an hour to keep our boy's heart rate under control. We don't see any other side-effects to them, but he's been on them so long now, how could we? It doesn't seem significant in any case.
Flonase - yet another steroid used for inflammation, but for the sinuses. This one helps our boy to keep a sinus drip from going down into his lungs and causing bronchitis or pneumonia. When it's used together with nasal rinses, it's really prevented his issues from becoming emergent. Sometimes, our boy gets nose-bleeds now that he's on Flonase, but they're minor and they get him lots of sympathy from the girls, the cool gross-out factor from the boys, and he gets to go down the hall to the school nurse. The school nurse loves him.
Cefdinir - an antibiotic that's used for bacterial pulmonary infections, sometimes called secondary infections. Hopefully, this will work for him this time. (Who names these medications? I tell you, the pharmaceuticals should have a talk with the car companies about naming their products.) We've had good results with Cefdinir.
Azithromax - another antibiotic used for these secondary infections. It has the benefit of taking only five doses with a ten-day effect. Our boy has never responded to Azithromax. We finally put it into his notebook so we won't try it again. So whatever bacteria he's growing, it's already resistant to Azithromax. This is a very good reason for all of you out there to remember how important it is to take ALL of your antibiotic once you've begun taking them. If you take a little and then stop, you're actually growing a stronger bacteria, teaching the little suckers how to survive the antibiotic.
Formoterol - We were prescribed formoterol fumarate for our boy just once a couple of years ago. For the next 48 hours, he had a very high heart rate, 140% of normal. Ironically, my husband was prescribed the same thing, Symbicort, within a month of my son's problem with it and he had the same response. Boy those were a tough couple of days. We had to strike that one off our list for good. The way I figure it, my husband and my son share enough similar DNA that an adverse response like this doesn't surprise me.
Right now, my son is on five different medications that we administer to him seven times a day. Four of those are given through a nebulizer, a compressor that blows bubbles through the liquid medicine so it can be breathed in like steam (except that it isn't warm). My boy is very patient sitting there for ten minutes each time. I wish I could tell the people that design these things that he still uses the little dragon mask that they gave us when he was younger. In the doctor's office, they keep trying to give us the thing that he has to hold in his mouth, like a pipe. Who wants to hold a pipe in their mouth for ten minutes four or five times a day when you can relax and use a mask, playing video games the whole time?
I try to let my husband sleep during the week because he still has to go to work, but he takes over when I don't get enough sleep during the day and I hit the wall. Sometimes, we're both awake because we're worried and our boy is lying there snoozing away. This morning, I woke abruptly, hearing what sounded like a dove call, very quiet among the ambient house sounds. It was my son, moaning in his sleep. So, I can tell I'm still on the adrenaline ride. Even talking about it sometimes, I get a shot of adrenaline. So, at night, when I can't sleep because my heart can feel its effects, I read blogs. Sometimes I still read the sick kid sites. They make me cry, but if it's 3am and it feels like just one other mom is up somewhere in the world, doing just what I'm doing, it helps. We are listening to our babies breathe.
Thanks for listening, jb
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