Fortunately we had a routine CF clinic visit for Dean (at the specialist) the day after us girls had our doc appts and all the scripts were filled. He was on Bactrim two weeks back for a deep cough so in my mind I completely thought he was "covered" from any of these recent illnesses we brought into the house. He looked great but actually woke with a cold that very morning. Doc listened and deteremined it was just viral but wrote us a script in case the cough came back. It did, 2 days later, so we filled zpac #3 (antiobiotic #4). The pharmacists at CVS must think I'm reselling this stuff !
After Dean's 4th day on zpac, we (conveniently) had his 18month appt scheduled (at the peditrician). Cold was still there and that nasty cough still lingering. Doc told me he had an ear infection. Wouldn't this be covered by the zpac that he was going to finish that evening? So confused! I thought antibiotics wiped you out and got rid of all the nasty little bugs? Never ending learning process for me. We got home, called the specialist to update them on the ear infection and find out if we needed to start Dean on another antibiotic. Checking the preliminary cultures from our "well-visit" last week, we were told that Dean cultured pseudomonas aeruginosa or PA (a nasty little bacteria that lives in water and soil and to most of the population, wouldn't do too much harm). Because the thick mucus that sticks in Dean's lungs forms a warm, moist environment, it's a great breeding ground for PA where it establishes permanent colonies causing significant damage to the airways and ultimately reduces his lung function. PA can be resistant to most antibiotics so the normal treatment is a 28 day inhaled antibiotic called TOBI.
So, the feelings part of this blog...I was sad. I know this is a bad one to have and we've been so great about keeping clean. We wash our hands everytime we come into the house from anywhere. Even Dean gets up on the stool, knows the routine and even says dry dry dry when he's done. We don't wear shoes in our house, we disinfect with our "green" cleaning products, we boil our nebulizer after every use, and on and on. I said to our nurse, I just don't get it, how did he get it? She said it's everywhere, water, soil, in the environment. Oh my...Can you picture an 18 month old boy in your head now? What is he doing? Digging the rocks out of the dirt? Helping you pull tomatoes off the vine in your salsa garden? Drinking out of a hose? Splashing in a puddle? Trying to turn on the jacuzzi in your tub? How can I avoid this bacteria with my little boy? Nearly impossible... Undeniably frustrating...
So, back to reality...after a few days of calls to figure out the details, namely the insurance bawking at the astronomical price of TOBI, we received the meds in the mail and added this to Dean's normal daily treatments. With our new schedule in place, we're set to attack this bacteria! For the next 28 days, Dean's treatment schedule will be:
- Pulmozyme for 10 min (inhaled through a nebulizer to thin the mucus in his lungs)
- Vest Therapy for 20 min (to move the mucus out of his airways)
- Tobi for 30 min (to attack the psedomonas bacteria) 2x a day 12 hours apart (once in the morning and then again just before bedtime).
- 3 Creon 6 with snacks and meals (digestive enzymes)
- 2 ml zantac 2x a day (to reduce the acid and aid in the absorption of food)
- 2 ml CF vitamins (extra A, D, E and K)