We switched to Cayston

A few weeks ago, I posted about Drew's medication plan for getting rid of his pseudomonas. We completed our two weeks of IV antibiotics and started on our 56 days of inhaled Tobi. In the past, Tobi seemed to irritate his airways, making his breathing kind of noisy and causing him to cough a lot. Since it had been 6 months since we were on it, we decided to give it another try. Today was the 10th day we were on it and I finally decided it was time to call the doctor. He would wake up sounding fine, get his regular breathing treatments and airway clearance, and then get his 30 minutes of Tobi and at the end of that 30 minutes would be coughing so hard he was practically gagging. An Atrovent treatment immediately following the Tobi seemed to help open him up and help breathe a little easier, but throughout the day he just wasn't getting back to a normal level.

The doctor described what was happening as a bronchospasm. "A Bronchospasm or a bronchial spasm is a sudden constriction of the muscles in the walls of the bronchioles or smaller airways. The overactivity of the bronchioles' muscle is a result of exposure to a stimulus which under normal circumstances would cause little or no response. The resulting constriction and inflammation causes a narrowing of the airways and an increase in mucus production; this reduces the amount of oxygen that is available to the individual causing breathlessness, coughing and hypoxia"(courtesy Wikipedia). Sounds about right.

You may wonder why we let this go on for 10 days before calling the doc, and there are a couple of reasons. First, we felt that continuing on the Tobi was important in the process of pseudomonas eradication. Second, there was no real fear that he was going to stop breathing. I've seen him in total distress and this wasn't that. It wasn't easy for him to breathe but it wasn't emergency room worthy. We were able to regain control with an Atrovent treatment (a medication that helps to relax and expand the airways). Third, I had hoped that it wasn't really the Tobi causing the problem. The girls have had little colds and I thought that perhaps he was just getting their cold which usually causing him a little bit more difficulty breathing, but after a few days of observation and being able to isolate the increased difficulty to the times when we were doing the Tobi treatments, I realized that it wasn't going to be something that we could continue on.

Drew's doctor does want us to continue on an inhaled antibiotic so that we can still try for pseudomonas eradication, so our next option is to try Cayston. Apparently there is an entirely different nebulizer system used for administering this medication that I should be receiving in the mail tomorrow. The plus side to this medication is that it only takes a few minutes to administer three times a day (like 2-3 minutes). The Tobi took us over 30 minutes twice a day, on top of everything else we were already doing, so this buys back a little bit of our time. Hopefully he won't have such a strong reaction to Cayston like he did to the Tobi, but I guess time will tell. Cross your fingers!