Figuring Out How to Keep Bennett Safe Through the Coronavirus
This post was originally published on In it For Bennett. Thank you, Breck, for sharing such insightful tips for people with underlying health conditions. You are a true example of the power of patient and caregiver knowledge.
Breck has also shared her insights on tracking in sickness and health, and the juggle, the time bomb, and marathon that is cystic fibrosis.
It's been a hard to know when and how...but self-quarantining seems nearly impossible to escape at this point. Due to cystic fibrosis, Bennett is part of the at-risk population extremely vulnerable to the coronavirus. If Bennett were to get COVID-19, it would likely, at best, compromise his long term lung health and, at worst, risk his life. (Side note: I realize that most children are being mostly spared from the symptoms of this illness, but doctors are unclear whether or not children with CF will be affected; we can only assume they will be as they are highly vulnerable to respiratory issues)
Although Waco has yet to see any positive coronavirus tests yet, we know it's just a matter of time. Spring Break is this week. Baylor students and many in our city who have been traveling will return this weekend.
For this reason, we have made the very difficult decision to self-quarantine for a time. The plan is to mainly stay at home with a few outings here and there but to eventually stop going out completely, as appropriate.
Questions I've had to recently ask myself are: what does it mean to self-quarantine? Do we just not go out? Do we stop going to school? Do we stop having people over? How far is too far and how far is just right? There are no good answers. It's such a personal decision. Even CF doctors around the nation aren't consistent with their recommendations. Nobody really knows what it is best.
The decision to self-quarantine was a slow progression. It came last week with cancelling of a large conference that I was set to attend in 3 weeks. Then, I decided to cancel our Spring Break trip to the Alamo. On Monday, I decided to cancel our two nights in a hotel in San Antonio. On Tuesday, I decided to cancel all of our plans next week. I don't know what we'll do after that.
Although it's been difficult to know where to draw the line, each day seems to reassure me the line I'm drawing is the right one. It's getting worse out there as the virus spreads.
The goal is to keep Bennett well. Is it even possible to do that? I don't know. Is my goal of staying home until it passes too lofty? Possibly. Is it worth all the trouble to try? Yes, I think so, to the extent that I reasonably can.
One of the things that reassures me that self-quarantining could be valuable for Bennett (outside of the fact, I'm not really sure I have much choice, considering the alternative) is: we've done it before during flu season and it worked.
Here's the thing about the flu, though. We get our flu shot every year. We have tamiflu should we get it. We have neither of these options with the coronavirus. So, if self-quarantining helped with the flu, it's really our only shot with the coronavirus.
I don't really know what our self-quarantining will look like for us over time. But here are the things I've done to try to keep our family safe (on behalf of Bennett):
Stock up on items to the extent it's reasonable (peanut butter, noodles, canned food, etc.).
Filled all of Bennett's prescribed medicines for the month
Make sure we have a working thermometer and cold/flu relief medicines
Make sure Bennett has all of his durable medical equipment at home
Stay home as much as possible; stop going out unless necessary
No big groups, such as church, birthday parties or ballgames; eventually we'll limit even friends
When able, have needed items delivered
Preparing for a self-quarantine is one thing. Experiencing it is another. It's very easy for everyone to get cabin fever and even to feel depressed. So here are some of the things I learned during our first quarantining experience that helped us cope being at home (and a few other tips I plan to put in to place this time around):
Get emotional buy-in from everyone, kids included; explain the situation and make sure everyone is on board.
Set a daily routine/rhythm so that everyone knows what to expect day
Get up on time, get dressed and make your bed every morning, even if you don't go anywhere (it will make you feel good)
Set a bedtime for everyone and stick to it; good sleep hygiene is really important to prevent depression
Develop excitement in the family by finding things to look forward to each day (this is especially important with young children who want to know, "what are we going to do tomorrow?!"); try to make each day slightly different
Give each family member as much space as possible during the day (it's easy for everyone to become irritable without appropriate space)
Set a certain period of the day for quiet alone time (necessary for introverts)
Set a certain period of the day for connection time (necessary for extroverts); ideas include: read a family book together as a family, put together a puzzle as a family or play a board game each night; make a fort in the living room
To address kid boredom, pull out old toys or suggest playing with old toys in a new way
Organize.a closet or drawer, kids love playing with new stuff or using old stuff for crafts; besides, at least when all of this is over you'll have a clean house!
Encourage everyone to keep learning (play educational games online; learn how to play an instrument, how to cook, how to paint, etc. Youtube has instructional videos for all kinds of pasttimes; learning will keep everyone stimulated)
Use videoconferencing to connect with people, especially the kids' friends
Bury yourself in a book
Enjoy the outdoors (there's no coronavirus in the woods)
Get out safely; you don't even have to go anywhere! Get in the car, roll down the windows and just drive; the change of scenery can be very helpful
Exercise daily; exercise is important for everyone so make it fun and regular
At the beginning of the quarantine, create a list of everything you want to do. Come back to it once the newness wears off.
Use videoconferencing to connect with people, especially the kids' friends
Bury yourself in a book
Enjoy the outdoors (there's no coronavirus in the woods)
Get out safely; you don't even have to go anywhere! Get in the car, roll down the windows and just drive; the change of scenery can be very helpful
Exercise daily; exercise is important for everyone so make it fun and regular
At the beginning of the quarantine, create a list of everything you want to do. Come back to it once the newness wears off.
We don't know when this will end. I'm not even quite confidence it's fully gotten started. But I do know that, at at the end of the day, every person and every family should do whatever they feel most comfortable with doing for the people they love.
I know I don't really have much control in keeping Bennett well from a highly contagious respiratory virus that is rapidly affecting the world. Bennett may get the coronavirus despite my best attempt. But, it won't be for lack of trying. And that is what I need to know to bring me peace.