Monday, January 16, 2017

Week 178: Flying blind

Humans, by nature, look for patterns. No human more so, perhaps, than the parent of a kid with a chronic illness. When did I see this particular thing before? What happened after I saw it? What did I have to do to get things right again?

Longtime readers know our pattern: sneeze goes to cough goes to puking goes to antibiotics (oral if this is the first or second or third cycle in a while, IV if we've done a few circuits of the pattern already). So, there we stood last Monday, 3 weeks into our first one-month course of Cayston, when the sneezing started. Anyone want to guess what happened next? Coughing? Puking perhaps? Yes, and yes. And, to make things scarier, not only had we already done many, many, many courses of antibiotics, but we were ON an antibiotic--the antibiotic that was supposed to help us crush whatever bug has been lurking in Lemon's lungs since September.

On Wednesday, I have to say, things were looking far from good. Lemon was pasty white, coughing, miserable, fever of 101F, huddled on the couch staring with glassy eyes at the world around him. I'd been in touch with the clinic on Tuesday to say that he was getting sick again, and the nurse practitioner and I had begun to concoct a plan. We hoped perhaps the Cayston would keep things at bay long enough to give the hospital some lead time--we wanted to coordinate several procedures at once and getting all those people in a room at the same time involves juggling a lot of schedules. We were targeting admission the following Tuesday. On Wednesday, given how bad things were looking, I contacted the nurse practitioner again and said I didn't really see how we would make it until Tuesday given the trajectory we were on--one we've been on so many times before.

The NP called and emailed and did whatever other magic there was to do and somehow got everyone aligned.  We were to come in Thursday afternoon so he'd be all ready to go for the big day Friday. On Friday morning, we would have Lemon put under general anesthesia, get a PICC placed, and have a bronchoscopy done. After that, we'd spend at least 72 hours in-patient so that they could titrate the dose of IV tobramycin, a drug he's never had before, but given that IV Zosyn didn't kill whatever this is last time, they wanted to add something new. Once everything was titrated, we'd go home and finish out 2 weeks of IV's at home, Zosyn continuously for 22 hours a day plus a dose of tobramycin every day. If this sounds like a big, daunting plan, that's because it is. And this plan does not describe the logistics of staying employed, maintaining a household, taking care of not one but two children, etc. But, the nurse, Papa Bear, and I agreed--we've been fighting this since September, and we still don't actually know what it is. So it was time to find out and kill it once and for all.

This brings us to 5:30 Thursday morning, when Lemon bounded into our room and shouted, "Good morning! It is a great day!" Most parents are ill-equipped to receive surprising news at 5:30am, and we are no exception. We looked at Lemon. No cough. Good color. Lots of energy. What? THIS WAS NOT PART OF THE PATTERN.

Remaining in the state of disorientation that occurs when the predictable chain of events is derailed, we staggered around. We did his morning therapy. Had coffee. Had breakfast. Handed the kids off to the nanny. Did some work. Listened and watched and waited for a hint of what had been going on the day prior. And there was none. Just before mid-day, I called the clinic and told them what was going on. The nurse I spoke to (not our nurse practitioner) suggested that we come in and go through with the plan anyhow, because we had a plan, and Lemon had been sick for so long, and so forth. Papa Bear and I talked the whole thing through again, and I talked it through with my ace support team of fellow CF mamas. On the one hand, he has been so sick, for so long, and the hospital had managed to get everything set up perfectly for him, and if we canceled and he suddenly got worse again, we'd have to do everything described above but without the advantage of things being set up ideally. On the other hand, I absolutely did not want to subject Lemon to procedures and medications that he did not need. Ultimately, the other hand won out, and I called the clinic to say we were cancelling and would not be showing up for our admission that day.

I still have no idea if this was the right thing to do or not. What I can say for sure (or almost for sure) is this: what happened here is something new to us. Lemon got a respiratory virus while he was already on antibiotics. The virus made him really sick for 72 hours or so, and then he was able to clear it on his own. I am pretty confident of this because, shortly after deciding to bail on the hospitalization, I started to feel really lousy myself. Friday, Lemon went to school, and I hid in the basement nursing cough drops and burning through an entire box of tissues.

By Sunday, I was pretty much back to normal, and we decided to celebrate the fact that we had more or less survived a week without anything going catastrophically wrong by taking the kids out for donuts. Lemon had been asking to go to a restaurant for the last few days (lord knows why, not like he eats or anything) but we thought Dunkin Donuts might be up his alley in terms of degree of formality and menu. He selected a Green Bay Packers donut and was quite thrilled with the whole thing. So thrilled, in fact, that he was unable to sit still at all and at some stage decided to try to climb back up onto his chair from the floor where he'd been standing, using a more athletic and higher-velocity approach than is typically advised. This resulted in him flying back off the chair at a similarly high velocity, and colliding with the table forehead first, splitting open his left eyebrow.

Fortunately, that particular Dunkin Donuts is pretty close to our local urgent care clinic, and the incident occurred just a few minutes before they were scheduled to open. We hustled Lemon over there, only to have the doctor there tell us that it definitely needed stitches but that we would have to go to the ER at Children's Hospital because she had a hunch that Lemon might possibly need to be sedated to let anyone put stitches in a half-inch from his eye. So, Lemon and I dropped Lime and Papa Bear at home and headed over to Children's. When we got there, the guy at the front desk said, "Oh, hey, I remember you!" (comforting?). Of course, the doctors there looked at Lemon and decided that he definitely did not need stitches, but rather just some glue, which they put on and then sent us home. Sigh.

So, that was last week. Tomorrow, we give Lemon his last dose of Cayston. Then, we watch, and we wait. I wish I could say that I was concluding the blog post like this because it's a serial and it's always a good idea to end an episode on a cliff-hanger. But, in fact, that is just how our life is right now.








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