Saturday, July 24, 2010

Pseudomonas

Only a week-and-a-half ago, I was thinking how CF had become more of a background element in our family's life--still present, but definitely not something that was at the forefront. Then, a day before our vacation to Portland, OR, we got a call from our CF Nurse Practitioner. Peter's latest throat culture grew Pseudomonas.

Here's a few facts about this scary bacteria, Pseudomonas aeruginosa (PA):
  • A particularly aggressive and hard-to-eradicate bacteria
  • Thrives in the lungs, sinuses, and other wet environments
  • Loves mucus, attaches to mucus, prompts the creation of more mucus
  • Is the leading cause of lung disease in CF patients
  • Infects about 80% of CF patients
You can read more about Pseudo (and see a picture of a culture with PA) here: http://www.wellsphere.com/cystic-fibrosis-article/what-you-need-to-know-about-pseudomonas-aeruginosa-pa/213877

Fortunately, Peter has a "rare" (spotty) and "non-mucoid" (doesn't grow as aggressively) version of Pseudo, and the throat culture showed that Peter's PA was sensitive to the entire panel of drugs used to treat it. Thanks to the Cystic Fibrosis Foundation's research efforts, we have drugs to combat Pseudomonas (notice the red "anti-infective" ones): http://www.cff.org/treatments/Pipeline/

For the next month, Peter is on 2 nebulized treatments of TOBI a day (yikes, $3400 worth of medication in my refrigerator) that has to be done after his Vest treatment, not during the chest physiotherapy like his other neb medications. TOBI has to "sit" on the lungs to work correctly, so doing it during the Vest would be counterproductive.

He's also taking an oral antibiotic, 2 daily doses of Cipro (also use to treat Anthrax, yes, Anthrax) for two weeks. Sadly, that means that Peter's treatments have become a 2.5 to 3 hour affair everyday. Ughhh. But the alternative is worse. So, after a bit of phone/pharmacy/insurance gymnastics we got the TOBI and Cipro from a retail pharmacy in Portland and spent a chunk of time each day in the hotel room doing therapies because CF doesn't take a vacation even when we do. (By the way, we still had a great time on vacation. Portland is gorgeous!)








Photos by me (the top two--I think--though I'm not exactly sure if I had the camera in hand for these) and my fabulous friend Kelita Flatman, a teen photographer I've been mentoring lately.

Sunday, July 4, 2010

Little Artist

Peter is absolutely fascinated with drawing. He'll grab your notebook, a bunch of paper from the printer, construction paper from the craft drawer, or his cheeks (yes--he was practicing drawing Xs on them on Friday) and he'll draw and draw and draw. I've been thrilled that the artist gene has passed on. My dad is a graphic design professor who is also well-known for his fine art silk screen prints, and my nickname was "Artist" when I was little. 

Peter's watches Blue's Clues like a student learning in an art class. It is so cute to see him with his own "handy-dandy notebook" drawing along with Steve. He even does it while doing his Vest treatments, holding his nebulizer mask in one hand, and drawing with a crayon in the other!





 Here are some of Peter's best drawings (though I admit, many of his other ones just look like circles and scribbles.) Is this advanced for a 3-year-old? He seems to have learned how to draw very fast. It's only been a few weeks since he started in earnest!

His first drawing of our family.

Train tracks.

A train.

A smiley -- "with a hat." (He always draws hats on his smileys. Don't know why, but it's cute.)

A whale.

Slippery Soap from Blue's Clues. Notice all the soap bubbles?

I think that's pretty good! Here's Slippery from the show page:

Thursday, July 1, 2010

In the GREEN!

Our CF clinic was Monday, and we are thrilled that Peter is now 55% BMI. That means we've got the "green light" on his diet, activity level, and enzyme absorption. Woohoo! (He's almost always been under 50% BMI--where he needs to be to grow those lungs as big as he can.) Peter's gained 3 pounds in the past 3 months and grown too (without losing that weight). Hurray! I think a lot of it has to do with switching enzymes -- at first he was taking 4 Creon pills with meals, but he was starting to have more and more digestion problems. The gastroenterologist increased it to 5 pills just to see if it would help. It did, but when we went back down to 4, we started seeing the same issues. So, we've switched to Zenpep. The granules in the capsules are a lot harder to swallow, but Peter is learning and the enzymes are working a LOT better. It's so nice to know that Peter is digesting his food.

Here's our little buddy at my Photo Club shoot the other night. We had an awesome time with the horses at a friend's barn!

 Family photo by Stacey Johnson


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