How much time does it really take to take care of a "child with special health care needs?" Thanks to some new research, we don't have to guess anymore. A paper that came out last month in the journal Pediatrics last month looked into this issue (the story was picked up by NPR--you can read their story here). The answer is a lot. For a kid with CF, this study found that parents provided 12.9 hours of care per week--one of the top 3 conditions of the 20 conditions they looked at. That's 12.9 hours of just care that focuses specifically on the child's medical needs, not all the other care that any kid needs. 12.9 hours of running the vest, delivering inhaled medicines, washing and sterilizing nebulizer parts, pouring formula into feeding bags, drawing up medication and vitamins into syringes, washing the syringes, and so on and so forth. Those 12.9 hours do not include activities that the study considered "coordinating healthcare outside the home," things like making appointments, contacting care providers, dealing with pharmacies, ordering supplies, and dealing with insurance companies. That's an additional 3.9 hours per week. In summary, this is why I have not returned your phone call/email/holiday card.
As a caregiver, I've gotten used to the amount of work I have to do to keep Lemon healthy, and it doesn't bother me too much anymore--I'm used to my share of those 12.9 hours being gone, my expectations have been reset. I'm doing those tasks at home, we have a routine, and I can multitask. What really bothers me is the 3.9 hours. Those to me feel like a complete and utter waste of time, every time. Those are the things where it feels like "the system" could just work so much more efficiently, so many more things could be automatic, and so many of the things that are supposedly already "automatic" could actually work in an automated way (why it takes so much effort to get refills of prescriptions that are supposed to automatically refill, I have no idea). It's validating to know that my experience is pretty average, or average for those of us who live at the extreme of this continuum, and I guess I'm glad to know that my efforts are one tiny part of the $35.7 billion worth of work that parents of kids with healthcare needs provide annually.
Cayston has definitely increased our care burden this month. We just finished our second week, and the good news is that Lemon has no cough as of now. We have two more weeks to go, and then our first 28-day course of Cayston will be done and we will see if it was any better than oral antibiotics at really reaching deep and killing whatever's been making him sick since September. Because Cayston has to be administered after a vest treatment in order to be maximally effective, we're locked into doing the vest 3 times per day at 30 minutes a pop. Then the Cayston itself has to run, that's another few minutes, and another few minutes to set everything up beforehand, and another few afterwards to take everything down, and wash the special Cayston nebulizer (you only get one of those, so you have to wash it after each use and then sterilize it once a day). So, at the moment, just the breathing treatments aspect of our lives is at over 14 hours per week. It is going to feel like a vacation to go back down to just 2 treatments a day!
This was the week that we were supposed to be in Boston. We are still sad about not going but it was definitely the right decision. Lemon is doing really well, and many people that we wanted to see in Boston were sick this past week, so had we gone and had Lemon managed not to catch something on the plane, we probably would have had to avoid many of the people that we were specifically traveling to see. We enjoyed a pretty quiet week around here, and even threw a little New Year's party with some friends in our neighborhood. I'd be lying if I said I wasn't nervous about the coming year, but I suppose we'll tackle it like we did the last one--one week at a time. Wishing all of you happiness, peace, and health in the year to come.