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James had an appointment with his pulmonologist today. A pulmonologist is a doctor who specializes in the respiratory system. Basically, anything that helps you breath. This includes the nasal cavity, the throat, the windpipe, the diaphragm, and the lungs. Here are a few notes from the appointment:
Our primary pulmonary concern is managing James’ secretions. Since he can’t swallow and manage his secretions on his own, he needs to be frequently suctioned. He has found himself in the hospital on multiple occasions in respiratory distress because of the secretions.
The doctor prescribed a medication called Diuril. It is a diuretic which causes a person to make more urine, which helps the body get rid of extra salt and water. The hope is that this will dry James up a bit and make his secretions more manageable. He wants James to take it once a day for a month and if he seems to be doing okay, discontinue using it.
James has been on a drug called Robinul for a while to help reduce his secretions. The doc increased the dose a bit because James has grown.
The course of action is to control the secretions and keep an eye out for infections (dark or yellow secretions). If the above meds don’t work, a trach will be needed. We’ve been fighting a trach, but it might be what is best for James. We’ll have to see if these meds work and go from there.
I can’t remember if I mentioned this is earlier posts, but James was born with something called pectus excavatum. This is a congenital deformity of the chest where the breastbone is sunken into the chest. In some cases, pectus excavatum can interfere with the functioning of the heart and lungs. The pulmonologist is not concerned about this and said that any surgery to correct it would only be for cosmetic reasons. You can kind of see it in the picture below. Notice the indentation in the middle of his chest? That’s pectus excavatum.
One other thing that the pulmonologist mentioned is that if James starts to swallow, that will improve his noisy breathing and then encourage a cough. If only James can figure out how to swallow.
