CF Checkups

Don't panic! This is just a test.

 For those of you who don't know, my son has cystic fibrosis. We drive two hours every three months to the CF clinic where they check his growth, have a check up, and take a sputum culture (commonly known to the rest of us as throat culture). The throat culture is done to identify the bad bacteria that are currently growing in Toe's lungs, so that if he suffers from an exacerbation (a flare of of said bad bacteria), the doctors will know the most effective antibiotics to prescribe for the specific baddies in Toe's lungs.

During the clinic, we meet with our nurse (the master-coordinator who is the point person for every child with CF in the clinic. He answers our questions or directs us to those who do. He is a superhero and we worship the ground he walks on), one of the five-six pulminologists who deal with CF (We like them all. We mostly see Dr. Link, a phenomenal doctor who really listens and gives you time to process information and form questions), our dietician (who has helped us struggle through Toe's early cow-milk protein allergy and has been the one to push Toe's weight gain in an effort to help Toe's lungs develop properly), and our social worker (also amazing!). They set up the meeting for fifteen minutes, but the process usually takes about two hours on a regular day. We are given ample time to address any concerns that have come up in the interim and have our questions answered.

We're on a pretty regular schedule. Check up every three months (this will continue for his entire life) that includes a throat culture, blood draw once a year to check the vitamins, sodium, and other goodies in his blood,  and a chest X ray once a year.

At five and a half, Toe is ready for a new assessment: the lung function test. As this is new to us, I am not as up to speed on what we're doing here, but here is what happened. First Toe had to be decked out in haz-mat gear. He was then given nose clips. This is to ensure that during the test, Toe is only breathing through his mouth and into the machine.

Toe gets nose clips

"Turn so your mom can take a picture!"

 Next, he was taught how to properly breathe into the device that would measure his lung function. He watched the monitors (behind them in the photo) and would take 4-5 normal breaths and then a huge breath in to blow out the image of candles on the monitor (which much have been attached to the machine, because they responded to his breath). For a first time, he did really well, although he needs to work on a long out-breath to completely empty his lungs rather than one forceful huff.

Kim was fantastic. She made the whole process playful and fun.

We were then given reminders about how to do PEP and huff-cough technique as well.

Outcomes from this particular visit:

• We are still addressing the dry cough Toe has had since May. Since he caught a regular cold Friday and still has that cough, it was difficult to assess whether the two week course of antibiotics he just finished helped to eradicate the other. We will have to follow up on this. In the meantime, Toe continues to take Flovent, an anti-inflammatory, in case he has asthma (Apparently there is a kind of asthma that just has a cough, but does not involve wheezing. The things you learn...).
• Toe's height:weight ratio put him in the 66th percentile for children his age. This is HUGE. To have his lungs develop properly, they like to have him above the 50th percentile. We have clawed our way up from the 7th percentile two years ago.
• They want to have us change from the percussive therapy (also known as "clapping." We call it "Whack-a-Toe") to using a vest or PEP. This is an entirely new protocol to us that involves very specific and focused breathing through a series of exercises. I'm a little daunted, but we will figure it out. All of these types of treatments help to move the mucus in Toe's lungs after breathing treatments aimed at loosening said mucus. Loosen it up, move it out. We do this 2-3 times a day, every day.
• It was recommended we raise the head of his bed 10-15 degrees to help with his night coughing which we believe is due to acid reflux. He is already taking high doses of omeprazole for his CF (similar to Prevacid). We tried this and  he did not cough last night. Huzzah.

Also, J got a flu shot yesterday. Toe will get his flu shot as soon as the pediatrician gets in the vaccine.

Long day. We celebrated with dinner out. 

 Here are some photos from the drive home.