My boy is home from school because of a hard cough. This morning I had to give him Xopenex, a medicine like Albuterol, but with only one structure of the chemical and not its mirror image. Here we go again. He has viral-induced asthma. This kid has had so much medicine in his lifetime. Advair, Flovent, Spiriva which elevated his heart rate by 50% for 48 hours, Pulmicort which made him gain weight, Flonase, Xopenex which raises his heart rate and makes him jittery, Singulair which made him argumentative and depressive, Prednisilone and Prednisone which opened his lungs, but raised his heart rate and left him so full of nervous energy that he once banged his head into the couch repeatedly until we held him down to make him stop. All in the name of continued breathing.
My son had pneumonia four times before he was in second grade. There were nights in which I wondered if I'd give him toxic levels of medicine because I might have been too tired to write his last medication into his notebook. We have two notebooks filled with lines of what medicine, usually a steroid, that he took, how much, and at what time. That way my husband and I could trade off and maybe sleep every other night. It helped at the emergency room too. They just copied notes down from our notebook instead of trying to rely on our memories after two or three days without sleep.
The last couple of years have been easier, but I remember the first time he got pneumonia and ended up in the hospital for four days. Have you ever held in your arms a boy so sick that he was flaccid no matter what they poked into him? I'm telling you, it made me question my belief in God for a number of months afterward. He was four. He wasn't getting enough oxygen and so we let the staff take care of him and we slept on the little pullout couch in his room He had RSV, the virus that's so dangerous for preemies. I still have a soft spot in my heart for the staff at Children's Hospital. They kept him alive. I was so happy when my son got more alert and worked to pull off all the tape they'd put on him, despite the fear that he'd pull out his IV by accident. After that, he got RSV at least once during its season between January and April. Last year was the first time he didn't miss more than ten days of school at one time.
My boy never did like stickers after he was in the hospital that time. I remember the look on his face, once, about a year later, a nurse tried to put one on the back of his hand. She was smiling, but I knew right away that the look on his face was asking me if he had to let her do it. I explained about his having been in the hospital and she still didn't get it. I had to be quite specific that because the nurses had stuck so many things onto him, he still didn't like stickers much. She didn't leave him alone and felt compelled to press the damn thing onto his shirt which he obediently left there. When we walked out the door, he whispered, "Mommy, can I take this off now?" I never let a nurse offer him stickers again. I got quite a few looks, but it saved him from having to be stickered when it wasn't necessary. Put that together with the fact that he knew how to put the little heart monitor clasp onto his finger more expertly than the triage nurse and you get the idea how many times we had to go to the hospital because of his breathing.
The second time he got pneumonia, the doctor at the emergency room said, "Yup! He has pneumonia alright. See here, how his ribs are doing retractions, the muscles really squeezing around his ribs to help him breathe. Take him back home. Look for oxygen levels below 90%, retractions, or even if you just don't like the sound of his cough. If you need to, bring him back in, but I'm sure he'll be more comfortable at home and recover more quickly there." I almost started crying right then and there, wanting to say, "But I'm so tired. What if I miss something important or give him an extra dose of medicine by accident because I didn't write down the last dose? What if I end up killing him?" I didn't say it, but there's something to be said for a well-rested staff to give two people a break when they're trying to keep a sick boy breathing.
When my son gets a certain kind of cough, when he has that in and out raspy sound to his breathing or when his oxygen levels start to go down, I can still get a rush of adrenaline. I can even feel it if I talk about it too long. I tried to describe what was happening to him to my friends and even to my family, that we could truly have used some help, you know, the casserole thing or someone volunteering to sit with him during the day while I slept, or even simple sympathy. People repeatedly ask if he'll grow out of it. My husband and I sometimes talk about how it was that no one besides a few caring doctors and nurses ever really understood what we were going through as we tried to keep our boy breathing through the night. His first grade teacher even told him to go to bed earlier and get to class on time when I had kept him home from school a few mornings to get a little more sleep after he had pneumonia again.
So, many times, my husband and I have dug out the nebulizer, the peak flow meter, then the oxygen sensor and the stethoscope. At some point, we knew to pack the overnight bag for the emergency room. I usually cried as I collected clean underwear, changes of clothes, toys, books, and the notebook of medications given. At that point, we were both in the mode of an emergency response. It would take a day or two for either of us to get tired enough to sleep. Deep into the night, our son would really try to sleep, but with every breath, there was a cough, a moan, a pause, and then another cough. I woke with nearly every rattling cough.
By daylight, my son would drift off and we'd both sleep for a while before he got up again. My husband would drag himself into work. I'd give him medicine in his nebulizer, make him tea and soup, and hope for a little sleep for both of us. By dusk, I wanted my husband to come home from work because my son's cough would get nastier and his color would drain. We'd try to alternate sleeping for the week or two it took to get over the hump, to the point when he was just sick like an ordinary boy. When my son got a little better and I began to relax, I often slept for ten or twelve hours at time.
Tonight, we're in for a hard night. We both know it. Still, I haven't packed a bag, or even pulled out the oxygen sensor. His heart rate is up by 25% from the Xopenex so I know he won't be able to sleep even though he's tired. I slept as much as I could during the day today so I'm ready to be up tonight. I need to call him in sick from school so I don't have to wake up in the morning. He may be growing out of this, but in the meantime, we'll make a list of his medications, take his heart rate and peak flow, we'll listen to his breathing and we'll watch for that time when we need to pack a bag and be ready to leave the house at a moment's notice.
Thank you for listening, jb
My son had pneumonia four times before he was in second grade. There were nights in which I wondered if I'd give him toxic levels of medicine because I might have been too tired to write his last medication into his notebook. We have two notebooks filled with lines of what medicine, usually a steroid, that he took, how much, and at what time. That way my husband and I could trade off and maybe sleep every other night. It helped at the emergency room too. They just copied notes down from our notebook instead of trying to rely on our memories after two or three days without sleep.
The last couple of years have been easier, but I remember the first time he got pneumonia and ended up in the hospital for four days. Have you ever held in your arms a boy so sick that he was flaccid no matter what they poked into him? I'm telling you, it made me question my belief in God for a number of months afterward. He was four. He wasn't getting enough oxygen and so we let the staff take care of him and we slept on the little pullout couch in his room He had RSV, the virus that's so dangerous for preemies. I still have a soft spot in my heart for the staff at Children's Hospital. They kept him alive. I was so happy when my son got more alert and worked to pull off all the tape they'd put on him, despite the fear that he'd pull out his IV by accident. After that, he got RSV at least once during its season between January and April. Last year was the first time he didn't miss more than ten days of school at one time.
My boy never did like stickers after he was in the hospital that time. I remember the look on his face, once, about a year later, a nurse tried to put one on the back of his hand. She was smiling, but I knew right away that the look on his face was asking me if he had to let her do it. I explained about his having been in the hospital and she still didn't get it. I had to be quite specific that because the nurses had stuck so many things onto him, he still didn't like stickers much. She didn't leave him alone and felt compelled to press the damn thing onto his shirt which he obediently left there. When we walked out the door, he whispered, "Mommy, can I take this off now?" I never let a nurse offer him stickers again. I got quite a few looks, but it saved him from having to be stickered when it wasn't necessary. Put that together with the fact that he knew how to put the little heart monitor clasp onto his finger more expertly than the triage nurse and you get the idea how many times we had to go to the hospital because of his breathing.
The second time he got pneumonia, the doctor at the emergency room said, "Yup! He has pneumonia alright. See here, how his ribs are doing retractions, the muscles really squeezing around his ribs to help him breathe. Take him back home. Look for oxygen levels below 90%, retractions, or even if you just don't like the sound of his cough. If you need to, bring him back in, but I'm sure he'll be more comfortable at home and recover more quickly there." I almost started crying right then and there, wanting to say, "But I'm so tired. What if I miss something important or give him an extra dose of medicine by accident because I didn't write down the last dose? What if I end up killing him?" I didn't say it, but there's something to be said for a well-rested staff to give two people a break when they're trying to keep a sick boy breathing.
When my son gets a certain kind of cough, when he has that in and out raspy sound to his breathing or when his oxygen levels start to go down, I can still get a rush of adrenaline. I can even feel it if I talk about it too long. I tried to describe what was happening to him to my friends and even to my family, that we could truly have used some help, you know, the casserole thing or someone volunteering to sit with him during the day while I slept, or even simple sympathy. People repeatedly ask if he'll grow out of it. My husband and I sometimes talk about how it was that no one besides a few caring doctors and nurses ever really understood what we were going through as we tried to keep our boy breathing through the night. His first grade teacher even told him to go to bed earlier and get to class on time when I had kept him home from school a few mornings to get a little more sleep after he had pneumonia again.
So, many times, my husband and I have dug out the nebulizer, the peak flow meter, then the oxygen sensor and the stethoscope. At some point, we knew to pack the overnight bag for the emergency room. I usually cried as I collected clean underwear, changes of clothes, toys, books, and the notebook of medications given. At that point, we were both in the mode of an emergency response. It would take a day or two for either of us to get tired enough to sleep. Deep into the night, our son would really try to sleep, but with every breath, there was a cough, a moan, a pause, and then another cough. I woke with nearly every rattling cough.
By daylight, my son would drift off and we'd both sleep for a while before he got up again. My husband would drag himself into work. I'd give him medicine in his nebulizer, make him tea and soup, and hope for a little sleep for both of us. By dusk, I wanted my husband to come home from work because my son's cough would get nastier and his color would drain. We'd try to alternate sleeping for the week or two it took to get over the hump, to the point when he was just sick like an ordinary boy. When my son got a little better and I began to relax, I often slept for ten or twelve hours at time.
Tonight, we're in for a hard night. We both know it. Still, I haven't packed a bag, or even pulled out the oxygen sensor. His heart rate is up by 25% from the Xopenex so I know he won't be able to sleep even though he's tired. I slept as much as I could during the day today so I'm ready to be up tonight. I need to call him in sick from school so I don't have to wake up in the morning. He may be growing out of this, but in the meantime, we'll make a list of his medications, take his heart rate and peak flow, we'll listen to his breathing and we'll watch for that time when we need to pack a bag and be ready to leave the house at a moment's notice.
Thank you for listening, jb
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