Pseudomonas

Ethan's culture from last week's clinic came in yesterday and it showed that he had grown a bacteria called Pseudomonas Aeruginosa. This is one of the bacterias that is especially harmful in Cystic Fibrosis patients lungs. We've been hoping and praying that he wouldn't get it for a long time. It's inevitable that he was going to get it eventually.

As soon as I saw the result on the Kaiser website I emailed Ethan's pulmonologist to ask her if it was the bad one then I called one of my friends who has a son with CF to ask her opinion. She couldn't remember which pseudomonas was the bad one either. Luckily after a call to the pediatric pulmonary nurse, Ken got her on the phone and just as she was talking to him our pulmonologist came down the hall to tell her to call us. We are lucky that our team is so aggressive in treatments. This is why we have cultures and appointments every 3 months so we can catch bacteria before it continues to grow.

Pseudomonas Aeruginosa is found all around us. It's in soil and even water. It's very hard to not come in contact with. In fact, everyone by the time they are an adult have pseudomonas in their bodies. It effects patients with CF more severely because of all the sticky mucus buildup in their lungs. It's hard to get rid of.

Ethan was started on a new nebulizer called TOBI for the next 90 days and an antibiotic called Cipro for the next 14 days. Unfortunately, the Cipro can only be found quickly in pill form so we have to crush it and mix it into his food. He's onto us. We've got to figure out a new way to get it in him or hope we can get our hands on some of the liquid soon.

This all is very stressful. We're worried about Ethan and how we're going to get rid of this bacteria. I hated putting him to bed last night knowing that the bacteria was just sitting in his lungs. In 6 weeks we'll go back for another culture and hopefully it will come back negative. If it's positive Ethan will have another round of antibiotics. Either way we'll be doing TOBI for 90 days to ensure that it's gone. After the 3 months are over, Ethan will go in for a brochoscope to check to see if the pseudomonas is completely gone in all of his lungs. If it's not he'll be hospitalized for IV antibiotics. The pulmonology team is very optimistic that they will eradicate it from his body. I just hope it's sooner than later.

Unfortunately, Ethan can get pseudomonas over and over again throughout his lifetime. It's when it makes its home in his lungs that he will have problems. We're hoping and praying that the next 3 months will go smoothly and that we will beat pseudomonas!!!

Thanks for all your prayers! We can feel them.

This is a photo of Ethan doing TOBI for the first time. It was also his first time using a mask. He fought us for 20 minutes kicking and screaming but in the end held his own nebulizer to finish the treatment. Today we had success with both of his morning nebulizers. He barely fought us. I think we're headed in the right direction.