It's Hard to Act Christmas

Cayden and Trinity are both still not back to baseline (aka no cough). In fact for Trinity it has gotten a whole lot worse. So I took both into the CF clinic in Madison on Monday to be seen. New rounds of antibiotics for both, sputum cultures to find out what the heck is growing, and chest x-rays (which I'm still waiting for results on). The doc felt pretty confident that it isn't anything more than just a cold virus running its course, but definitely taking its toll in the process! We're continuing chest PT 3-4 times a day. That's pretty much all we spent our time doing over Christmas Eve and Day. I can see a huge improvement in Cayden already. Trinity on the other hand is hanging on to it!

A family picture from Christmas to share:

I came across this quote about "acting" Christmas. It's truly what the season is all about. As I drive by people's homes I am saddened to see abandoned trees already a week after Christmas Eve. Don't they know the three kings haven't even come yet???

"It is easy to think Christmas,
and it is easy to believe Christmas,
but it is hard to act Christmas."

Thinking about that quote how can we act Christmas. My thoughts go straight to the people that didn't welcome Mary and Joseph. Those who simply did not have "enough" room. Do we have just "enough" of Christ in our lives. Or are we ready to take the next step of faith and make more room. Even if it isn't the most comfortable. Or convenient. Or if it means giving up something. Can we act Christmas long after the tree has been taken down. The tinsel and glitter all faded. Can we act as Christ did by becoming one of us. Taking on the sins of man.

It is hard to act Christmas. But we don't have to look very far for how to do it. The manger is enough a reminder.

Changes, Changes, Changes

Hopefully you noticed the fresh makeover I gave the blog. Very much needed. I also found other CF bloggers who listed their current meds list. I also added that feature on the right hand side to keep you up-to-date with how the kiddos are doing. I will try and be diligent about updating that although it can change pretty frequently.

Trinity had a regular 6 week check-up last week at the CF clinic. And even though she has been eating more than her two brothers combined to our dismay she didn't gain much weight (very common for CF patients in case you're wondering). Cayden recently changed pancreatic enzymes so we're in the process of moving her in the same direction as her brother.

Dr. Green would also like to start her on Pulmozyme, an inhaled nebulized drug once a day. Pulmozyme is really cool because it's not an antibiotic but a preventative medicine. Pulmozyme is the only treatment for CF that functions like “scissors” within the mucus, cutting up the DNA that makes mucus thick and sticky. Thick, sticky mucus could build up and lead to blockages in the airways.

There's some debate about the safety of Pulmozyme use in CF patients under 5 because there is limited information available at this time. However, our docs feel very confident in it's early use. I for one attribute it to Cayden's lack of lung infections and hospital stays over the past 4 years.

Here's a picture of Cayden doing a Pulmozyme treament when he was Trin's age now:


Trinity probably won't start Pulmozyme for another couple of weeks or so since the co-insurance is $539/month (regular price tag: $3,000!!!). Right now wer're in the process of filling out an assistance program which we've done before, but I forget what a lengthy, time consuming process it is!

We are also WAITING to enroll Trinity in a study at the UW to test the affectiveness of hypertonic saline. For more on that read my previous blog "Bring the Rain". Basically hypertonic saline is a super strength version of salt water nebulized which lubricates the lungs and thins mucus. I say "waiting" because the last two times we have been at clinic Trinity has not been at "baseline." Another medical word to describe her current condition with CF. Baseline for most CF kids is no cough to a rare, dry one. Baseline also means not being on antibiotics unless taken on a daily basis (Cayden takes a low dose of azithromycin even when he's healthy).

Both the kids are struggling with colds, but slowly making their way back to no cough (hurray!). Both are doing chest therapy/vest treatments 2-3 times a day. Cayden did 4 a days last week and I think that made all the difference in the improvement we're seeing this week. Thank goodness his school (and Miss Jodi) is so great about doing a treatment after lunch for us! More later...

I Just Want to Live

Tonight Chris and I (correction: mostly I since Chris was already fast asleep out on the couch) were watching the latest episode of Mercy. New hospital drama that's replacing ER for us. Great show. 3 seconds into it the patient is doing "therapy" and coughing up mucus. Hmmm...looked a bit familiar for us! Yep, he had CYSTIC FIBROSIS and needed a lung transplant. Long story short he got a donor but couldn't receive one because of a blood transfusion he had received a few month prior that would make his body reject the new organs. His options: 1) Opt for a type of radiation to kill all the plasma in his body with a POSSIBILITY for organ donation or 2) skip all the above; go home and live until his lungs are done.

He decided not to go through with the treatment and forgo the transplant. But what he had to say about his decision really affected me as a mom treating CF patients (my kids). The nurse on this man's case couldn't fathom why he wouldn't at least give the procedure a shot. He told her that he had been fighting all his life to beat the disease. For once in his life he just wanted to LIVE. Those words broke my heart. I suddenly wondered do I sympathize enough with my kids? Do they ever want to just stop fighting all together? Do they resent me when I tell them they need to do another round of treatments...for the third time today? Sometimes I forget how strong my little ones are. How much of a fighter they are. And selfishly I hope they never give up fighting. I just want them to live forever.