"A doctor who cannot take a good history and a patient who cannot give one are in
danger of giving and receiving bad treatment." (Author Unknown) Experience has taught me a lot that I didn't know about being the mother of a patient. The most important lesson that I have learned is that you have a short window of time to describe a medical concern before the doctor tunes you out and decides for himself exactly what is going on. When you are being shuffled between various specialists' offices, it is even more important to have your facts and your thoughts clear. (I keep a notebook.)
As I have discussed recently, my youngest son has been in the midst of an ear infection/asthma flair for a couple weeks/months now. His primary doctor evaluated the situation and prescribed treatment three times. After the third visit, he referred us to our pulmonary specialist. Our pulmonary specialist in turn altered and extended the treatment started by our son's primary doctor. He then referred us to an ear, nose, and throat (ENT) specialist and a pediatric gastroenterologist to try to determine the source of our son's ongoing asthma flair.
The ENT specialist briefly reviewed our son's medical history; gave him a short exam; then determined that his ear appears to be healing. As she put it, "That is a chronically ill ear. It looks retracted and sick but actually seems to be healing." She stated that she can't believe he doesn't have some hearing loss by looking at the ear in question. I explained that he had just had a full audiology exam and has perfect hearing and is actually hypersensitive to sound. She just shook her head. You've got to laugh. Once again, the little guy is defying the odds.
One of the frustrations of going between different specialists for related issues is the lack of coordination between these different departments. When dealing with specialty departments, you take the first available appointment or you may wait for months to get seen. Because they are fitting you in as soon as possible, it's almost impossible to coordinate different appointments for the same day. As a result, you end up taking a lot of time off from work and school to try and make these appointments.
Thanks to modern technology, doctors and specialists within the same medical system are able to share their notes with one another through the computer. This sharing of information and opinions should help save time if the doctors have done their homework and read the notes before coming in for the appointment, and if the doctors have clearly and completely documented their information, treatment, and recommendations. Those are some pretty big ifs. It becomes your job, as the parent, to make sure all information has been provided, and provided clearly. It is your job to clarify, explain, or expand upon the information needed to make the correct decisions.
Another problem with going between different specialists for related issues is that each doctor will be approaching the problem from her specialty's perspective. For example, our son's primary prescribed newer antibiotics for ten day treatments because he knew how much medicine our son has been on and he fears over using antibiotics. Conversely, our son's pulmonary doctor prescribed a month of Bactrim because he fears the length of treatment wasn't sufficient to completely clear the ear infection/sinus infection that may have been causing our son's asthma flair. He primary concern, as a pulmonary doctor, was to get the airways less inflamed; knock out any existing infection; and regrow the injured cilia of the sinuses. On the other end of the spectrum, the ENT doctor said she would have recommended no antibiotics; use of a humidifier (which we already use and our pulmonary doctor said was not really necessary); and a nasal gel to address his nose bleeds. She stated that some ear infections may take months to clear and that time and patience are the best treatment. She did acknowledged though that a chronic asthmatic, once flared, can't wait months for an ear infection to clear. They have to be able to breathe. As a result, she concurred with the pulmonary doctor in both his treatment and the referral to gastroenterology. If the ears continue to act up over the next month or so, she will see him back and probably put in his fourth set of tubes. *Fingers crossed that this is not necessary.
We have run into this conflict between specialties, time and again with our son with his developmental and medical issues. The doctors say he needs a particular service. The school says he needs something different. His neurologist says his issues are neurologically based and nothing can be done but provide treatment for what develops with time. The school says please get him assessed for an auditory processing disorder and a functional vision disorder. His neurologist disagrees and says that is not needed. Once again, everyone is looking at it from their own specialty.
I'm looking at our son as his mother. I love him. I want the best for him, be it medically or educationally. As his mother, I am his advocate, his voice. When things are confusing or unclear, I try to make it make sense. When communication is lacking, I provide the missing pieces. I read and I research and I ask questions. I make phone calls and I fight with insurance companies and I badger secretaries for information. Through it all, I try to be polite, patient and compassionate to the individual who is just trying to do his job. At the same time, I am his mother. I will make sure that what needs done, gets done and gets done well.
I thank God for the ability to be an advocate for my child. I thank Him for the strength and fortitude to do what needs to be done. I also pray for all the little ones who don't have advocates, who don't have a voice speaking for them. Protect them Lord. Cover them with your grace and protection. Continue to watch over us and grant us wisdom, strength and guidance.
Saturday, April 20, 2013
Tuesday, April 9, 2013
Traveling With An Asthmatic
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.
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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