Thursday, September 23, 2010

CF Education Day coming up!

One of the cool things about being involved in the CF community is going to events like this Saturday's CF Education Day at Scottish Rite. As a member of the Atlanta CF Family Advisory Council, I have been part of the team planning this education day. There are going to be vendors (woohoo! free stuff!), breakfast, lunch, and snacks, as well as lots of great speakers. Probably what I'm most excited about is the chance to meet other CF families in person.

I know you can still RSVP by this Friday if you want to attend, so if you are in the Atlanta area and are interested in CF, feel free to come! More information here: http://www.choa.org/default.aspx?id=8781


Saturday, September 18, 2010

Frequently Asked CF Questions: Our Medication and Treatment Routine

Over the past week, I've had a few friends ask about Peter's treatment routine. Here's the medication and treatments we administer every morning and evening. All of it takes about 1.5 to 2 hours a day. If you add cleaning and sterilizing equipment, it's a bit longer. As you can imagine, our place feels a little like a pharmacy! Medication is a big chunk of our lives, but we are very grateful there are things that help, even though they only treat the symptoms, not the root cause of the disease. I marked meds with a star (*) if we use the generic.

Nasal Rinse (for irrigation of the nasal passages) and Flonase* (nasal steroid) -- I did a post on Peter's nasal rinse. Check it out.


The Vest Airway Clearance System (to loosen the CF mucus in the lungs) -- It's 40-50 min. a day of chest pounding fun!



Pari Vios Nebulizer (during Vest treatment) -- The compressor breaks up the liquid medication into breathable particles so it can be delivered directly to the lungs. 


Albuterol (to open the airways and allow for more productive coughs) -- This is medication administered through nebulizer, though we only do this one when Peter has a cough or cold.

Pulmozyme (to thin mucus in the lungs) -- This is CF-specific medication administered through nebulizer as well.
Periactin* (to increase appetite), Reglan* (to prevent vomiting), and Bactrim* (an antibiotic since Peter has a cold lately) -- These medications are administered through oral syringes. Can I just say that Target and CVS have the best oral syringes? I've tried all the pharmacies in the area, and since we go through a lot of syringes, I definitely have preferences!


Prevacid* (an acid reducer) and Zenpep (pancreatic enzymes for digestion) -- These pills are opened and sprinkled in applesauce because Peter can't swallow pills yet.

Culturelle (to promote healthy bacteria in the gut when Peter is on an antibiotic) -- This is also sprinkled on applesauce.

Axid* (another acid reducer) and SourceCF vitamins (to supplement the fat-soluble vitamins can't process) -- This are Peter's evening oral meds in addition to his other regular oral medications.

Whew! Can I also add breakfast/dinner, bathing, dressing, brushing teeth, and getting ready for the day/bed? In the morning, if I start right at 7:00, we can get everything done and be out the door right before 9:00. In the evening, I try to start by 5:00 p.m., so we can be done by bedtime, 7:00 p.m.

Friday, September 17, 2010

A Swimmin' Summer!

We must have gone swimming at least once a week this summer. The pool, the lake, the sprayground, a friend's place. Whenever there was a a chance to swim, we took it! Here are some photos from a recent excursion to the lake. We had so much fun with friends!




Tuesday, September 14, 2010

Back to "normal"

Last week we stayed home most of the time because Peter was sick. And now I know. That is not a good idea. I missed running at the gym and having my regular breaks (Peter didn't go to preschool and the babysitter's). Peter was short-tempered and hard to manage, even though we did have a couple play dates at our place. Peter still has a lingering cough, but we've resumed our regular schedule this week. It is much, much better. Next time Peter's sick, I've got to make sure to have some alternate activities for us. Like running together (grin).

Wednesday, September 8, 2010

Sick Day and Thoughts on Antibiotics

I have lots to post about our fun end-of-the-summer activities, but today Peter woke up with a phlegmy cough and his nasal rinse was pretty, uh, productive. No wonder he is coughing so much. I'm hoping it's something that some extra Albuterol and Vest treatments will take care of.

I guess every mom goes through this -- not knowing whether or not their child's cold is really serious or not, but having to cancel school and activities for a day or so until they know whether the illness will get better. I tend to assume it's going to be okay, but jump on the treatments pretty fast so that it won't get any worse.

I take Peter to the doctor if the cold doesn't go away in a couple days, and most times, even if the doctor and I think that it's not serious, Peter will go on antibiotics anyway. We are the exception to the rule about not prescribing antibiotics for a routine cold. We can't risk Peter getting really ill; that could put Peter in the hospital.

However, we also know there is an increased risk of bacteria becoming resistant to antibiotics in a population where those medications are over-prescribed. We just hope that the current practice of not prescribing to the general population will continue. It's the exceptions-to-the-rule cases like us that greatly benefit from not having more antibiotic-resistant infections around. So, the next time you go to the doctor and they don't prescribe an antibiotic for a cold, you can remember how that practice is helping Peter live a more healthy life! Thank you!

Thursday, September 2, 2010

Little Man

Jacob and I had an opportunity to make some portraits of Peter last week. Here's how a couple turned out. Boy, I love my little man!




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