I'm woken from a sound sleep by that now familiar cough. It's that tight, bronchial, asthma cough. He's made his way downstairs to my room and is standing beside my bed waiting for me to help him. As I begin to pull on warm clothes, he starts to whimper and the coughs are coming closer together. I quickly get out the emergency kit that I keep behind the couch for moments like this. Okay, calm down. Pull out the nebulizer and plug it in. Check the air tubing for bends, kinks, or moisture. He's starting to cry. Crying is the worse thing he can do right now. It makes him cough more, produces more mucus, and makes me feel more panicked inside. Making soothing noises and telling him to breathe slowly and stop crying, I pull out a new pack of Albuterol vials and tear one off. Attach the breathing chamber, open the Albuterol vial, and squirt in the liquid. Ready. Pull him onto my lap. One last wipe of the eyes and nose. Turn on the machine and hope it does the job. He's so panicked at this point that he's actually trying to fight me giving him the treatment. Stay calm. Hold his arms out of the way of the steam and medicine. Make soothing sounds. Wait for it to start to work.
Slowly, the coughing begins to decrease. Gradually, our heart rates begin to slow. Eventually, as the steam begins to lessen, his head starts to nod against me as he gives into exhaustion. There's very little coughing now. It feels like it took an hour but it was actually less than fifteen minutes from beginning to end. I turn off the machine; pick him up; and carry him back up to bed. While tucking him in, I coach him on our now familiar mantra. "Sleep on your side, not your back. If you start coughing, come get me. Try to sleep for a little bit." Exhausted, I head back to bed. I know we'll be doing this again in three hours. I HATE asthma.
There is something very isolating about being awake with a sick child in the middle of the night. We live in a time with phones and Internet, yet being up with a child who can't breathe during those darkest hours makes you feel very alone. The situation always seems more intense, more foreboding at night. My husband can be sleeping in the next room as I administer the treatments but it stills feels scary and overwhelmingly lonely. What if the treatment doesn't work this time? What if he can't make it the four hours until his next treatment can be administered?
During one of his prolonged asthma flairs, when we have been doing breathing treatments every four hours for days, I resort to keeping notes in a notebook. Exhaustion keeps my mind from functioning properly and the days and nights begin to blend into one another. I have to write down what meds he received; what dosage he received; and what time he received it and can have it again.
I have had to become an expert on my child's condition. What are his typical symptoms? What meds and at what dosage works best for his symptoms? When should the meds or treatments be administered? At what stage do I break down and call the doctor? Which doctor do I contact, his primary or his pulmonologist? I've had to learn to be his advocate and speak up for what I want for him.
When we came home from the hospital with my youngest child, I knew something wasn't right. Newborns typically have sneezing, wheezing, coughing, and snorting. They are adjusting from a liquid environment inside mom, to a dry environment outside of mom. My youngest didn't stop exhibiting those symptoms. I would lie awake at night and listen to him breathe, knowing something wasn't right. At two weeks of age, after he stopped nursing, I took him into the doctor. He was diagnosed with his first ear infection and "reactive airway disease". Infants cannot be diagnosed with asthma because it can't be confirmed or ruled out at this age. Instead, they are given the diagnosis of reactive airway disease until they outgrow the phase or until they are old enough to have more formal tests conducted.
Needless to say, my youngest has not outgrown the phase and has been diagnosed as a chronic asthmatic. When he was an infant, he was on preventative oral steroids to reduce the inflammation of his airways and reduce the mucus production of his airways. They caused him to retain fluid and "puff up". He looked like a BIG Gerber baby. (I took his picture and put it on the side of food items as presents for people at Christmas that year - my weird sense of humor) He weighed twenty-seven pounds at nine months of age. Unfortunately, the extra size did not help his gross motor and fine motor delays. They only contributed to them. At five months of age, I questioned if there was something different we could do for him. They then switched him from the oral albuterol and oral steroid to an inhaled Albuterol and an inhaled steroid. Pulmicort is an amazing drug. It did wonders for him. It helped to reduce the frequency of his illnesses and allowed him to begin to lose some of the fluid weight that he had packed on.
Three sets of ear tubes, helped reduce the number of asthma flairs that we experienced. An ear infection would set off a sinus infection, which would set off an asthma flair that could take days or weeks to end. We also had to learn to advocate what we needed in this area as well. Requesting a referral to the ear, nose and throat specialist. Keeping track of how many ear infections he had had in a specific time span. (Twelve ear infections in six months) What meds had worked and not worked. (No to Amoxicillin and Zithromax, yes to Cefprozil and Bactrim) Requesting a longer time span of meds rather than a shorter one. For example, a five day Zithromax dose was not adequate in time or dosage to completely cure a sinus/respiratory infection. Symptoms would abate but not cure and in a week to ten days, he was sick again with the same symptoms. We had to learn to tell our primary, "No. That med doesn't work for him. If you use that med, we need it for twenty-one days, not ten days." or "No. That med causes diarrhea and stomach discomfort. Please use Cefprozil instead." Our pulmonary doctor got to the point where I could call him, describe symptoms and he knew what I was working with. He went so far as to give me a standing order of Bactrim to keep on hand. He knew I was only going to give it to him as a last resort when I had utilized all my other options. That is the benefit of educating yourself and learning to advocate for your child.
Trial and error and our pulmonoligist's advise has helped us develop a number of preventative and early stage treatment options that we routinely utilize. During the winter months, our hands are raw from all the hand washing we do. As stated earlier, we use preventative meds like the inhaled steroids. We also switched him from Allegra to Singulair. If symptoms begin to emerge, we elevate the head end of his bed on wooden blocks. We start to run a humidifier in his room at night and on the first floor during the day. He gets two squirts of saline spray up each nostril in the morning and at night. When serious symptoms start, we increase the saline to every hour or two. During times of illness, his steroid dosage is doubled. Tussin is used to liquefy any sinus drainage (The step he is most resistant to!). As a last resort, Albuterol treatments are started and if progress is not made, an antibiotic is requested. These steps have become part of our normal existence. During especially bad winters or seasons, I start taking notes to share with his pulmonary doctor in case we need to "tweak" his meds or dosages.
As he has grown, his immune system has strengthened. We are able to prevent or head off most illness in their early stages. His asthma flairs have, for the most part, reduced in frequency and intensity. We have learned to advocate for our child and his needs. With that said, I stilll HATE asthma! I pray that one day he completely outgrows it. Or grows up, moves out, and has to manage it on his own. (small smile inside)
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