So I really do promise that this blog won't be a daily thing...my life really isn't that interesting that anyone would want to hear from me that often!! This has just been a full week. With road trips, doctor visits and birthdays, I apparently have a lot to purge! I want to start this post by giving everyone a quick look into a 'typical day' of someone with CF...(this was taken directly from www.cff.org)
Because the severity of CF differs widely from person to person, and CF lung infections flare up from time to time, there is no “typical” day. However, each day most people with CF:
- Take pancreatic enzyme supplement capsules with every meal and most snacks (even babies who are breastfeeding may need to take enzymes).
- Take multi-vitamins.
- Do some form of airway clearance at least once and sometimes up to four or more times a day.
- Take aerosolized medicines—liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer.
Sounds easy, right? *INSERT LOUD BUZZER SOUND HERE* Nope. Not at all. Some kids with CF can take upwards of 50 pills a day and have to take hours out of their busy little lifes to sit and do treatments EVERY DAY. It sucks. CF sucks. Every 3 months (and that's if they are 'healthy'), CF'ers visit a care center for regular appointments. These appointments take us 3-4 hours, depending on whether or not lab tests and x-rays need to be taken. You meet with social workers, dieticians, respiratory therapists, pulmonologists, pharmacists, and CF specialists. Your room is literally a revolving door the entire time. At each appointment a throat culture is done to make sure there are no icky bugs growing in their little lungs. You can not imagine the anxiety that races through my body when that 241 phone number shows up on my caller ID after our appointments to tell me the results of those cultures. Unfortunately, in Ry's short little life we have already had 3 of those calls start with the words "I'm so sorry to tell you this, but..." Pseudomonas is one of those nasty little bugs that you are coached from Day 1 to watch out for. 3 times Rylan has cultured positive for pseudomonas. Pseudomonas can kiss my @ss. I.HATE.IT. Pseudomonas is an awful bacteria that basically settles into the thick mucus trapped in her lungs. And once it sets up house, it's pretty hard to get rid of. Here is a fun little quote I stumbled across online, 'Respiratory failure caused by the infection is often the ultimate cause of death in many people with CF.' Yep. I.HATE.CF.
August 31st was one of 'those calls'. Bless our pediatrician's heart. He sounded more upset that I was. So, on September 1st we started the 1st day of the pseudomonas regime. 28 days of HARDCORE antibiotics and increased vest treatments.
Here's Ry in her vest...it fills with air and shakes violently to help break up that mucus. And STILL always smiling.
We do 30 minutes of vest in the morning along with an Albuterol nebulizer (opens up the airways) and then when the vest is done we start the TOBI nebulizer (antibiotic to kill the pseudomonas). This takes about 55 minutes. Then she takes the Cipro (oral antibiotic to kill the pseudomonas). Twenty minutes after lunch comes another 30 minute vest treatment with the Albuterol nebulizer again. Later after dinner and another dose of the Cipro comes a 3rd vest treatment. Again we give her another Albuterol neb, followed by a Pulmozyme neb (loosens the mucus), and then another round of TOBI. This last treatment takes another 55 minutes. Some days if we have time and she is up for it, we squeeze in a 4th vest treatment just for good measure. Between all of that and sterilizing everything, you are looking at 3-3.5 hours of stuff each day. Have I mentionned that Rylan is 2?? Yeah. That doesn't all go over so good...
On to the good news, WE ARE DONE with that round of meds. So now we wait...we wait to see if and when the pseudomonas rears it's ugly little head again. Our CF center here in town and the CF center at the University of Minnesota have each given us different options on further treatments and how to move forward. It's enough to make your head swim. Since there is no 'black and white' when it comes to CF, most times you just have to pick a path and travel down it to see if it works. That's a heavy burden to carry when you're the one picking the path FOR someone else. Especially when that someone else is your baby. I don't want to make a wrong choice. My husband sure doesn't want to make a wrong choice. So, for now we wait. We have 28 days to decide which clinic to listen to and which path to travel down.
Little Miss Pumpkin Muffin opening up her Olivia the Pig birthday present in the car. Her exact quote, "I lub you Olibia"
