Tuesday, December 15, 2009

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...

1 comment:

  1. I just came across your blog today and I am very glad that I did. Wow! You have the most wonderful children and you can just see in every picture how happy they are. I watched the video with tears in my eyes...
    just because you are an amazing family. I had no idea what you endure every day. You will be in my prayers daily as you continue on this journey to finding a cure. You are an inspiration to me and I can only hope that I am half the mom that you are.