Drew is sick. He's had a lingering "cold" for about 3 weeks now and it wasn't really getting any better or worse so I was just kind of keeping an eye on things. He had a follow up appointment at his ENT last Friday and they said the nasal polyps he had scraped out back in Feb had grown back. That's such a bummer. The doctor reiterated that he had pretty aggressive sinus disease and would probably need surgery again sooner rather than later to get that under control. We knew it would happen again but were hoping for more like a year, not 6mo. It wasn't the worst surgery he's ever had, but having to get put under for anything is no fun, and he was in some serious pain when he came out of it. I guess we will wait and see.
While we were there, I asked them to take a culture to see if there was any bacteria growing that we needed to treat or if the "cold" was just a viral thing that was going to go away on its own. (For what its worth, he's never gotten over a virus on his own. It always turns into a bacterial infection. Maybe someday.) He grew haemophilus influenza (h-flu). Its a pretty common bacteria, something that causes ear infections or sinus infections and not at all specific to CF. Regardless, he grew it and we decided to treat. And I'm glad that we did because overnight he went from fine to terrible. He was coughing up a storm all day yesterday and not interested in eating or drinking. He just wanted to be held and put his head on my shoulder and I obliged as much as I could but there are 3 others also needing my attention so it was a rough day. When he's sick, our already packed days get even more full, with increased breathing treatments and airway clearance. I estimate that yesterday, between breathing treatments and time spent nursing the baby, I spent between 4-5 hours sitting on the recliner with a kid in my lap. That left many children bouncing off the wall and acting up because they weren't getting my attention. To top it all off, last night was Ella's dance recital and I had agreed to be the stage mom which meant arriving an hour early. I know it sounds crazy that I would volunteer to do something extra, but I so rarely have time to give my girl undivided attention and the twins were staying home so I thought she would like it. With the way our week was going, I regret my commitment, but we made it and she danced and looked adorable and I took pictures...and now we are done with dance.
I found a new website this week called "But You Don't Look Sick". It written for/about living life to the fullest with any disability, invisible disease or chronic pain. The woman who writes the blog said the following: "The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn't have to. The healthy have the luxury of a life without choices, a gift most people take for granted." Gosh, if that wasn't my week to a T. Or my life really. And I hate it. I wish we could just go with the flow some days, and I certainly try my darnedest to make it seem like we do. But CF forces us to make choices. Choices about everything from treatments and medications to play dates with friends and simple family activities. When Drew is sick and we have to squeeze in extra stuff, it means we don't get to go to preschool end of the year parties, which disappoints someone. So we decide to try to do a small park ourselves which is closer. But we have to wait until we get his breathing treatments in. Then the baby needs to be nursed. And someone (me) needs to pack the diaper bag and make sure everything from drinks to inhalers are in the bag. And then we need to make sure everyone who uses the potty has gone because there is no bathroom at our small, manageable park. And now, at best, we will only have an hour at the park because we need to get home for lunch and naps because we have a doctor appointment in the afternoon to get to. And the baby needs to be nursed before we go. And I forgot to buy tights for the dance recital, but can't figure out when I will have a free minute to get to Target to get them. And oh yeah, the antibiotic that the doctor called in needs to be picked up from the pharmacy too. And this is all just the stuff that has to happen. Its not the extra stuff. Its not the dinners with friends and walks in the evening or the 20 minutes of free time to sit down and blog it all out. I hate having to think about every little detail all of the time. I wanna decide, while I'm out with friends, to have an extra drink and come home a little late. But when I do that, I'm extra tired and the nebs aren't cleaned for the morning because I get home late and just want to go to bed. But I have to pump first. Ugh. And I think often times people don't understand or get offended by my inability to commit to the non-essentials because they don't have to think about all of this. I don't like having to make these choices, but its my job. Even this weekend, our walk is on Saturday at 10am. And i'm already planning how we will have to get everything together and ready the night before, because if we wanna be there by 9:30 we will have to get up by 7 at the latest to get in all the treatments, feed everyone, sunscreen up, etc, etc, etc. And I can't forget the bonus insurance phone calls I get to deal with. Last week they totaled about 5 hours. And I'm not even exaggerating in the least; check my phone records. Sorry about the rant. Its just how things have been lately, and when I read that line from the new blog that I found, it hit home.
Now its 11pm and I already regret staying up this late. We have nothing going on tomorrow, or pretty much for the rest of June, and come July we are heading east, never to return. Ok. that's not even kind of true. But in my imagination, I'm going to leave all of our worries behind and visit with our family and friends up and down the east coast without a care in the world. The reality is that I'll probably spend half of the trip on the phone with the doctor or insurance company trying to explain why and how we need medication shipped to a pharmacy in Pennsylvania. Sigh. While today was filled with medications and an unhappy little boy, at least we didn't have to schedule around appointments and other commitments.
Wish us luck at our walk! We didn't hit our number for this year, but I did the best I could. There's still time to donate! Money buys science and science saves lives. And once that cure is found, I imagine my schedule opening up a bit :)