Monday, October 31, 2016

Week 167: Trick or treat

As you can probably tell, since I'm awake after 7pm, we are no longer doing our every 8 hours around the clock IV routine, which is a good thing. At our clinic appointment on Wednesday, the doctor and I agreed that Lemon had made a lot of progress (including gaining back some of the weight he'd lost), but wasn't quite back to where we wanted him to be in terms of respiratory symptoms. We decided that we had better be really sure we'd beaten back whatever was causing all these problems, and the best way to achieve that was another week of IV antibiotics. However, since Lemon was doing much better, the doctor felt that we could go down to every 12 hours instead of every 8, which has made a sort of amazing difference in my energy level. It's still a big to-do, and adds a lot of stress and a bunch of extra things to do every day, but is so much more manageable.

We're getting reevaluated again this coming Wednesday, and hopefully then they'll pull the PICC out and we'll be done with IV antibiotics. I say hopefully because Lemon is, I would say, 95% better. He still is coughing just a smidge more than what I would consider his baseline, and that cough sounds a bit more productive than I would ideally like. Of course, Lime is also coughing a bit and has a runny nose, as does pretty much every other human resident of Madison at this time of year. So, we'll see.

As an aside, running IV's at home makes you acutely aware of just how much plastic is used in modern medicine. The amount of garbage we're creating is just staggering. I have always thought of myself as an environmentally conscious person (recycling, composting, etc), but no number of LED light bulbs can possibly offset the amount of waste from even one course of IVs. I feel like I'm taking out the garbage twice as often right now as I normally do. It doesn't sound like much to write it down, but all those syringes, all that packaging, the gloves, the just adds up somehow. And then there's still all the normal stuff, including one kid still in diapers and a disposable tube-feeding bag every night. Yeesh. Please be extra good about reusing things this week on my behalf! 

In the mean time, we are doing everything we can to get Lemon's life back to normal. He's back at school, with his PICC tucked away inside a long-sleeved shirt. He went trick-or-treating tonight while his evening infusion was running, with his IV pump tucked away in his backpack and tubing running from the backpack down the back of his shirt to his arm. In typical Lemon fashion, he was absolutely thrilled about wearing his Superman costume, and was delighted to go out with Papa Bear and collect candy. When he got back to the house, he and Lime were allowed to have a small sample of the loot. Lemon took about a half-dozen licks of a lollipop and ate one Milk Dud. Lime, on the other hand, took one bite of a Reese's peanut butter cup, gave me a look that clearly said, "This food has existed in the world for my entire life and you didn't tell me until now????" and stuffed the entire thing into his face. Good thing we didn't have very many trick-or-treaters at our door this year, so we have a bunch of extras.

So, that's a wrap on an October that was more exciting than I think any of us could have imagined. Fingers crossed for a more peaceful November!

1 comment: