*sing* Summertime, and the CF is crazy…
It’s amazing how little we think about CF because it’s just a part of our daily life and routine, but on the flip, it is amazing how much we do think about it when it comes to extra events, especially as they come in the summer.
Here is a simple example: With extended daylight hours the neighbor kids are playing out for longer. This of course goes right up to dinner. When we would have normally started the evening Pulmozyme and CPT in the dark and quiet at 5pm during the winter, the world of childhood is still in full swing at that time during the summer. Do I really want to drag Nathan in, away from broad daylight and his friends, to start an hour of treatment? (One of his closest friends would also be in for the night before he gets done.) So a simple change is that we push CPT back until 5:30 (or even 6) and do dinner right after.
In fact, it used to be that we did the evening CPT (before Pulmozyme was added to the routine) at around 7pm, but it became such a dreaded chore for all three of us that we would put it off, and put it off. Then it was having to be crammed in right before bed… We decided to do it at the end of the daycare day so that all of our ‘work’ could be finished when the ‘workday’ was over. After all, it’s work for both us and him. We all want to be ‘off’ with the freedom to just play. But then the summer comes….
Nathan is holding a voting ticket in his hand. I asked him if he liked the red car or the orange car better, both ’07 Lotus’, and the young owner of the this one piped up, “You want to sit in it, Buddy?!” Guess which car got his vote. Guess which car got his ‘Best in Show’ vote!
And the weekends are different, too. If we want to go to Lowe’s Build and Grow on a Saturday morning we have to either get up at our regular workday time to have it done before we leave, or hurry back to do it right after. One weekend Andrew had training from 9 am until noon, and I wanted to use the truck to take Nathan to Lowe’s and a car show during that time. When would we do CPT? And don’t forget that breakfast has to fit into the morning also. It became a classic example of dropping something so we could get treatment done. We chose to sleep in, skip Lowe’s Build and Grow, and go to the car show in the afternoon when we’d have more time to enjoy it. That’s not so bad, but it’s lame to even have to make the choice. (It was made easier by the fact that the building project was to make a Captain America figure. He’s lame. Problem solved.)
Guess which car got MOM’S vote for ‘Best in Show’… This ’47 MG.
And the evening issue comes up again with the weekends. We already don’t want to stop everything to do Pulmozyme and CPT on the weekdays, but on the weekend it is SOOOOOOO much lamer. I do the evening treatments so this is especially lame for me since I’m not even including it in a ‘workday’ at that point. Honestly I’m sitting undisturbed with a movie and a glass of wine. Start treatment? I don’t think so. Nathan won’t want to watch my movie and I don’t want to watch him play minecraft right now… So those days I do like to put it off until the end of the day. Especially since Nathan and Dad will probably be playing video games and sharing chocolate together at that time anyway.
—> Another idea is to break up the Pulmozyme and CPT into two sessions instead of having it pretty much take up an hour together, but that isn’t the the most beneficial for his health.
Now camping. That’s pretty straight forward. Bring your meds and your clappers. Sit in a lawn chair. Right. What about Pulmozyme? Now you need a power source, AND you need to plan for sterilizing. Having 2 neb cups can be an easy answer for a short trip. We’ve also gone as far as doing the Pulmozyme on the morning we leave (instead of that night while out) so that we will be back before the next one, or only have to do a single one and not worry about trying to sterilize while living in a tent.
You could argue, “Just skip a session.”
“No. We don’t do that.”
Ever.
So here comes another one: Nathan has the chance to go to Vacation Bible School for the first time. It runs from 6-8:30pm for 5 weekdays. That is exactly when we’ve been doing Pulmozyme, CPT, and dinner. I have the option to start it even earlier, at 4:45, and cram in a PB&J before 6, or have a quick dinner and do treatment when he gets back starting at, what will inevitably be, close to 9pm; bedtime. Then we ask, “Is VBS worth it?” Well, if we put off everything that was ‘inconvenienced’ because of CF Nathan would never get to do anything at all. In this case we unanimously decided that the social interactions, and what we jokingly deemed ‘good ole fashioned indoctrination,’ were definitely worth it. You have to remember that Nathan has two full-time parents, who are also his daycare providers, his teachers, and his ‘nurses.’ That boy needs to get away from us. It’s good for him.
It should be noted that we don’t feel the desire to send him away at all. In fact we really enjoy all our time together as a family. I wish I could say we even used the time he was gone productively, but we really didn’t. I guess all of the ‘chores’ we have to do make our family what it is; a unit. What would we have been doing all this time if we didn’t have CF ‘to do?’
Nathan got to go to his first baseball game this summer. It was very fun. Right inside the entrance, as we first arrived, a foul ball popped over the bathrooms, so at the end of the game I sent it down to the dugout for the player named Nate to sign, and Nathan has a game ball! The game ended with the Pilots’ (our team) victory, 2-1, at the bottom of the 10th inning when two of the Oiler’s out fielders smashed heads and let the fly ball drop. It took a few minutes but the players walked off the field okay. The down side to going to a ball game? You guessed it. We were still doing treatment at 9:30 that evening, and that was after an early game on a double header day.
Ever since Nathan had to do Tobramycin the first time, at 6 weeks old, I’ve marked on the compressor any place, other than home, that he’s used his nebulizer. There will be more now that he does Pulmozyme every single day.
Later, in July, Memaw and Papa Ricky took advantage of a pre-planned RVing trip and stayed over at the end of our street so Nathan could camp-out with them. She even took over treatments for the night. Sounds easy enough, right? You can see below, Nathan dragging his new carry-on ‘rolly’ out to their RV. It pretty much takes the whole bag to get the compressor and meds moved over. I know she knows how to do things, and I know Nathan is a valuable resource, however he also told her Pulmozyme only takes 10 minutes… bah! One short phone call (yes, from just that far away LOL) for some review and confirming and he was on his way to done. I’m not sure what they did to fill the treatment time since there was no TV and I’m pretty sure he spent the entire rest of the time climbing from one piece of furniture to the next, but I know he had a wonderful time and it was well worth the extra effort even for as simple of an adventure as it was. “You gotta take ’em where ever you can get ’em,” my mom says.
Nathan and his daycare friend are playing Minecraft together during CPT. At least if he’s stuck in front of the ‘boob-tube’ he’s interacting with a friend at the same time.
But I have to admit it isn’t all bad. Yes, doing treatment for an hour and half every single day isn’t our favorite thing, but we are lucky that the medicines, technology, and knowledge exist. They truly are keeping our boy healthy. When he isn’t doing treatment Nathan is off playing with his friends just like any other little boy, and even when he is doing treatment he’s still usually playing with his friends, because of the way we’ve chosen to orchestrate our life. So instead of complaining, I will admit to the amount of work it takes, but be grateful and optimistic about the opportunity we have in-spite of Nathan having CF… and even some of those we have because of it.
Pulmozyme won’t slow down this boy.
A few fun photos of Nathan getting super dirty and doing Pulmozyme. You can see a dirt ring where the mask had rested. He also got his face painted at the motorcycle shop earlier this summer.
Sometimes Nathan’s friends pretend to do treatment along with him. Here they share some of the things they have in common, and also how they are different. (Nathan age 4)
Nathan riding his bike:
This video of Nathan and his friends at treatments is longer, but cute:
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