I wake from a sound sleep wondering what has startled me awake. Then I hear it, that choking gasping sound coming through the monitor. My youngest son may be seven but we still keep a baby monitor in his room for moments just like these. Unfortunately, these moments have been almost a nightly occurrence for the last month and a half. He has been in an asthma flair for nearly six weeks with no end in sight.
Our son's primary doctor identified that his right ear is infected. Has been infected. Over the last six weeks, he has been on Prednisone, an oral steroid, and he has been prescribed three different antibiotics. These medicines are in addition to his regular preventative medicines (Singulair, Flovent, Omneprazole, and Loratadine) that he takes on a daily basis. During flairs like this, we also use his Albuterol nebulizer every four hours, round the clock. In addition, saline spray is used to moisten his nasal cavities and wash out any bacteria that may be trying to grow there; the head end of his bed is elevated on blocks; and a humidifier adds moisture to the air and his sinuses. This is all part of our regular routine. We are used to this. It's what we do to survive life with our son.
Unfortunately, this time, none of it seems to be working. His primary doctor was at a loss for what to do so he put in an emergency consult with our son's pulmonary specialist. After going to see the pulmonary specialist, he was at a loss of what to do, so he put in a referral to the ear, nose, and throat specialist and the gastrointestinal specialist. In the meantime, his pulmonary doctor prescribed a month of Bactrim at the highest dosage and an increase in his Omneprazole. He fears that our son may need another set of ear tubes (he has had three prior sets). He also fears that he may need his tonsils removed (his adenoids were removed when the last set of ear tubes were put in). His biggest fear though is that the root of all of these issues may be reflux that is not being controlled by his current medications. Reflux is the primary cause of asthma in children. If reflux is the main problem, all we have been doing is the equivalent of putting a bandaid on an open wound. Until the other specialists can determine a definitive causation, he wants him on the Bactrim long term to control current infection; to prevent further infection; and to help the cilia in his sinuses begin to regrow. Life with this boy often seems like the children's book If You Give A Mouse A Cookie but instead it's If You Give A Doctor A Symptom.
During the midst of this current flair, my sister was getting married two hours from our home. I was dreading this event, not because of the wedding itself, but because we were taking our son along in his current state. Those of you that have had to travel with a serious asthmatic know that it is a practice in strategizing and planning. It's a challenge to remember to pack all the medicines and all the "gear". For example, we have a converter for our truck so that we can have electricity to power our son's nebulizer anywhere we go. This comes in really handy when traveling long distances or traveling where you aren't sure of an electrical supply. We also keep an emergency box stocked with all the supplies needed to treat the symptoms associated with such a flair. After making lists, packing, planning, and trying to think of worse case scenarios, I felt fairly confident that we could weather this without too many issues.
Fortunately, it went just about as planned. I forgot to factor in the fact that he was on Prednisone and would be contained to hotel rooms, churches and reception halls. That combined with his excitement for the event equaled manicness!!! He was like a ping pong ball set loose.
Thankfully we had rented a suite at the hotel because at 1:30 am, he woke with one of his gagging/choking/wheezing spells. Not wanting to wake his older brother who was sleeping on the pull out couch in the other room, I stumbled through the kitchen using my cell phone as my flashlight, trying to locate his emergency kit. After finding it, I took it into our room where I climbed into bed with him to get him sitting upright and administered his breathing treatment. My husband sat on the edge of the bed holding the nebulizer machine so the vibrations of this noisy piece of equipment wouldn't wake our older son or other patrons in other rooms. When the treatment was over and I had him settled back into bed, I verbally started going through my checklist of medications that he had been given and when he could take them again. At that moment, our little monster piped up with "Excuse me you two, could you hold it down please. I'm trying to sleep over here." I didn't know whether to laugh, cry, or choke him.
The next day, after arriving at the reception hall, my husband gave our son a breathing treatment on the tailgate of our truck. Thank goodness he gave him one before going in because he was a moving, grooving, boogie down dancer. He danced by himself, with brides maids, with other kids, with adults, with men, with women, basically, with anyone who would join him. He had a blast. As a result, he got coughing jags. None too serious though. My brother expressed concern that he was so busy and kept coughing. I told him if he could calm him down to feel free, it would be helpful. So for awhile, he played on his Kindle Fire with his uncle. Before heading for home, we gave him another breathing treatment on the tailgate of the truck. We survived! It was a beautiful wedding. My sister was GORGEOUS! We all had fun.
Living with a child like ours often feels like a balancing act. You want to keep them safe and healthy. At the same time, too much "safety" and "prevention" can stifle the potential that child might otherwise achieve. I want the best for him. I want him healthy and strong but I also want him to be free to experience life and live fully with the joy that comes so naturally to him. Lord, help me find that balance. Help me know when to hold him back and when to set him free. He'll find the joy wherever he goes. I just need to allow him the opportunities to find it.
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