Two years ago when Anna was hospitalized as an infant with pneumonia, she was put on a daily inhaled medicine that thins the mucus in the lungs so that it can be more easily coughed up. Scared from our experience and wanting only what was best for her, we administered this expensive medicine. After a while I started to wonder if she needed it. Once she was out of the hospital a few months, I never heard her cough at all after her therapy. She didn't seem to have the chronic cough of CF- at least not yet. Why were we giving her a mucus thinner to help her cough if she wasn't coughing?
After researching this medicine a bit I found out that it had never gone through a long-term study. The longest it had been studied in patients that were using it was a year. And- it had never been studied on persons under the age of five. I asked the doctor if we could take her off this medicine. The answer was no- because we were in the middle of cough and cold season and therefore it was not a good time to take her off this medicine, which he felt was a mild medicine and harmless anyway.
I asked again another time if we couldn't take her off this medicine- no was the answer again.
Finally, last week she had another appointment and I was determined that I would again broach the subject of the not-needed medicine. As her appointment approached, I began to have more than my usual anxiety as I played out in my head the conversation I would have about this medicine with her doctor. How would I defend my position? I talked to Steve about it and he pointed out that the doctors and staff are hired by us for their expertise, but we are not bound in any way to follow all of their recommendations. He said that we could just take her off the medicine ourselves, at least for a trial time period, and see how she faired. I had never thought about doing that. Once I accepted that as a possibility, I felt more in control, but I still wanted the doctor's approval.
So to give a short ending to a long story, I took a deep breath and told the doctor I wanted to take her off the medicine. He looked at me, asked if she were having any respitory issues, and then agreed to take her off the medicine until it may be needed in the future. My thoughts exactly. Just like that.
Victory! A small one, but a victory none the less.
Wednesday, March 20, 2013
Sunday, March 3, 2013
There and Back Again
We have traveled by plane with our five children, frolicked for a week in a sunny place, and returned- in good health. It is like a miracle...
About an hour before we left the house to begin our vacation, I pulled out a few surgical masks that the CF nurse had given me at least a year ago anticipating the day when Anna would wear one to her visits to the CF clinic or in public places. I had no hope whatsoever that Anna would wear one on the plane. Why would a two-year old want to wear a mask? I put a mask on myself and said something like, "This is a mask that you wear when you are on a plane." She was so excited that she nearly ripped mine off of me. I couldn't get her mask on fast enough for her. Then her three older brothers wanted to wear them too. I was amazed. I had to convince her that she didn't need to wear the mask until we got to the airport! She put the mask on just inside the airport door and didn't take if off until after we landed five hours later. She didn't even want to slide it down to take a drink of water. She was beautifully behaved on the plane and never complained about her ears hurting, about which I was quite concerned. She also wore the mask on the trip home, at a crowded museum, and allowed me to disinfect her hands the million times that I wanted to throughout the vacation.
We did have her medical bag searched by hand at the airport. I expected as much. We did not have to use the letter of explanation given to me by the CF doctor though. And the airport staff was helpful in letting us board early so we could stow the large, heavy bag in the overhead compartment.
Even though we were in a strange place, she readily sat for her daily therapy- thank goodness for videos from the library.
We did a lot of walking and even hiking and Anna was right there keeping the pace- even trying to climb up rocks! At this point in her young life anyway, there was no slowing her down. She was amazing.
I am so grateful that we were able to take this trip. So many times I doubted it would occur, and I was afraid to get my hopes up. I am humbled that we were blessed with good health before, during, and even upon our return. God is good.
About an hour before we left the house to begin our vacation, I pulled out a few surgical masks that the CF nurse had given me at least a year ago anticipating the day when Anna would wear one to her visits to the CF clinic or in public places. I had no hope whatsoever that Anna would wear one on the plane. Why would a two-year old want to wear a mask? I put a mask on myself and said something like, "This is a mask that you wear when you are on a plane." She was so excited that she nearly ripped mine off of me. I couldn't get her mask on fast enough for her. Then her three older brothers wanted to wear them too. I was amazed. I had to convince her that she didn't need to wear the mask until we got to the airport! She put the mask on just inside the airport door and didn't take if off until after we landed five hours later. She didn't even want to slide it down to take a drink of water. She was beautifully behaved on the plane and never complained about her ears hurting, about which I was quite concerned. She also wore the mask on the trip home, at a crowded museum, and allowed me to disinfect her hands the million times that I wanted to throughout the vacation.
We did have her medical bag searched by hand at the airport. I expected as much. We did not have to use the letter of explanation given to me by the CF doctor though. And the airport staff was helpful in letting us board early so we could stow the large, heavy bag in the overhead compartment.
Even though we were in a strange place, she readily sat for her daily therapy- thank goodness for videos from the library.
We did a lot of walking and even hiking and Anna was right there keeping the pace- even trying to climb up rocks! At this point in her young life anyway, there was no slowing her down. She was amazing.
I am so grateful that we were able to take this trip. So many times I doubted it would occur, and I was afraid to get my hopes up. I am humbled that we were blessed with good health before, during, and even upon our return. God is good.
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