Wednesday, May 30, 2012


Our battle with Jacob's respiratory problems began in October 2010. And we are still fighting. I don't write much about it anymore because he has not been hospitalized since 2011. And he is seizure-free. Epilepsy and electasis do not elicit the same level of emotional distress. But it is distressing. I was always so sure about Jacob's epilepsy. I am never sure about Jacob's respiratory problems. X-rays. Antibiotics. Acid blockers. Steroids. Bronchodilators. Runny nose. Cough. Vomit. Fever. Ear infection. We first put Jacob through two modified swallow studies and a feeding program evaluation because Jacob's X-rays seemed to suggest aspiration pneumonia. He passed every test. Then we had to give him Prevacid every morning and night because if he wasn't aspirating his food and drink, perhaps it was coming back up at night in the form of acid reflux. There was no change in the number of respiratory incidents though while on the acid blocker so I stopped giving it to him. He was also put on Flovent as a preventative steroid but between the three pediatricians we went through and the pulmonologist, there was not much agreement as to the dose and duration. In the meantime, Jacob had an ear infection with each respiratory incident so we began seeing an ear, nose, and throat doctor. And several ear infections later, he had tubes placed in his ears. But still, with each respiratory incident, there has been an ear infection, and so Jacob has already been on three different ear drop antibiotics. With the last infection, he was also placed on an oral antibiotic. He has been on albuterol nearly every day since September and has been on Prednisone four times since January. Jacob's pediatrician discussed the danger of continued exposure to oral steroids and changed his Flovent to Advair. Jacob will need to see the ENT in two weeks and if the infection has not resolved, they will culture his ear. Like I said, it's not seizures but it's stressful and depressing at times.

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