It’s been a little while since I last blogged – I guess I should have expected that after the baby came home!
One of the first weird questions we ran into after the baby came home from the hospital was whether or not I could do treatments in the same room as him. I, of course, sent out portal messages to the CF clinic, but I also asked some friends with CF and the CF Twitter community how they handle it, too. It shouldn’t shock anyone that I got conflicting advice.
One mother with CF told me absolutely not, while another said when her baby was just a newborn, she put a fan on and blew the air in the room away from her and her newborn. The one caveat the second mother expressed was that she never did her antibiotic in the same room as the baby. She followed this routine until the baby was well into infancy.
A mom (who doesn’t have CF), but has two young kids, one with CF and one without, responded and said that they allow her CF daughter to do treatments around the other young child, except for the antibiotic.
The one commonality – the antibiotic – confirmed my hunch. Exposing people to antibiotics when they don’t truly need them opens a whole can of worms.
My CF doctor eventually responded to the portal message and said that I shouldn’t be doing my treatments, especially the antibiotic, around my newborn while he is so young, but as he ages, I could eventually bring him into the same room when I’m not on an antibiotic.
For the record, a CF physician also responded to me on Twitter and said something very similar. The baby’s pediatrician also offered similar advice.
The real fear, wasn’t however, the non-antibiotic medications, but instead the aerosolized droplets that could be carrying viruses or other harmful particles for such little, little kids. When children are in the newborn phase before their immune system has a chance to mature, viruses can be big trouble.
The point was noted, and ever since, we have kept the baby out of the room while I nebulize my medications, though, I’m looking forward to when the little man can sit with me while I do my treatments. From what I’ve heard, the Vest is an excellent white noise machine that should put him right to sleep!
This little journey has brought new meeting to my off-antibiotic months. Although, Trikafta has seriously reduced my treatment burden (anywhere from 40-60% depending on what is counted), I still do my treatments twice a day. I had pretty serious existing lung damage before starting Trikafta complete with multidrug resistant pseudomonas, so I suspect treatments will always be part of my life in some way or another. Getting a cumulative hour back in my day, though, feels amazing.
One major win that I have had is that I no longer continuously cycle antibiotics. I don’t, for example, cycle Tobi and colistin from month to month. These days, I’m on colistin for one month, off for two months, and then back to colistin to reset the cycle in perpetuity. Those two antibiotic-free months feel like a godsend, especially when I look back at the amount of time, I used to spend inhaling antibiotics, which always felt like the longest parts of my treatment sessions.
My off months feel truly liberating.
As it turns out, though, those off months feel especially liberating now that we no longer need to be hypervigilant around the baby while I’m doing my treatments, and that’s the real win. It’s no longer only the 30 additional minutes I get in my day, but it’s also the coming prospect of getting a new treatment buddy when he’s old enough to sit with me and do treatments.
Of course, there are other wins like needing to sterilize two fewer neb cups per day… that’s always amazing.