Monday, October 24, 2016

Week 166: Unstable equilibrium

Having a kid with CF means living in a state of unstable equilibrium, like being in the car at the apex of a hill on a roller coaster. Even if at that moment on the apex you are sitting still, in only takes the slightest push in either direction to send you flying off down one side or the other. And last week's stomach bug was all the push we needed.

On Tuesday morning, Lemon started coughing again. I had a feeling this was a very bad sign, and contacted the clinic right away. We got a prescription for a further two weeks of augmentin, but the augmentin just was not up to the task of getting things back under control after we'd gone so far off course. Lemon was weakened by the stomach bug, and his throat was undoubtedly inflamed by all the vomiting he'd done. So, when he started coughing again, he started vomiting again, and it wasn't far from there to dehydration and a sort of downward spiral.

I called the clinic again on Thursday morning to try and get him seen. I spoke to a nurse at 9:45 who agreed that he probably should be seen.  She started scanning the schedule to see what appointments they had available. She found one and then said, "oh, but this one won't work, its at 10." Luckily, we live 2 miles from the hospital, so I said, "no problem, hold that spot." I hung up the phone, tossed Lemon in the car, and high-tailed it over. The doctor that we saw took one look at poor Lemon, huddled in my lap with dry lips, sunken eyes, and a big cough, and said "You're not going to like this, but I think we have to admit him." I wasn't surprised, since I agreed with that assessment--we needed a pretty serious intervention to get things turned around, both from a hydration perspective and to actually kick whatever's been plaguing Lemon since mid-September. He sent us home to pack up and get organized, and we were back at the hospital by 2 to get into our room.

They placed a peripheral IV right away. Some of you may remember from a few hospitalizations ago that it took the strength of 6 adult human beings to restrain Lemon enough to get a line started. This time, someone had the clever idea to use a technique I've only previously seen used on one of our cats while at the vet--they basically wound Lemon up in a bed sheet so that only his head and the relevant arm were exposed. Using this strategy, only 4 people were needed and the placement actually went pretty fast and smoothly. They got a fluid bolus into him right away and he perked up perceptibly. They also started IV Zosyn to start tackling whatever was in Lemon's lungs.

On Friday, Lemon had his 3rd PICC placed. This time, they did it under conscious sedation rather than general anesthesia. I got to stay with Lemon through the sedation, until things were pretty well underway, and I rejoined him as soon as the procedure was over. The hardest part of the whole thing was preventing him from eating or drinking until 1pm when the procedure started. We've often wondered what it would take for Lemon to be actually hungry--it turns out that taking in basically zero calories for a solid week and losing 10% of his body weight will do it.

We pretty much insisted that they let us go home on Saturday. Lemon was fully hydrated and doing much better overall. We've done home IVs before, so that gave the team at the hospital the confidence they needed to let us go. The only "small" hiccup that we've encountered being home is that the infusions, which are supposed to take 30 minutes each, are instead taking 60 minutes each. We've tried a new pump and new tubing with no improvement. Given that I'm administering these 3 times a day, at 6am, 2pm, and 10pm, the extra 30 minutes really matters. But, no one seems to have any idea what's causing the problem and their solution seems to be that since it's infusing and we're managing, we'll just ride it out. Easy for them to say, they aren't the ones saying up til 11:15 running one treatment and getting up at 5:30 to prepare for the next. We're being seen again on Wednesday morning and assuming Lemon is back to baseline, the PICC will come out then, so it's only another few days of this madness--which is a good thing!

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