SOCIAL MEDIA

23 March 2020

How We're Doing CF Care At Home During COVID-19

Bennett uses a home spirometer.

My family has been self-isolated in our home for nearly two weeks now, an effort to keep Bennett safe from COVID-19.  And I am fairly confident it will be many more weeks, possibly months, before our family will be able to safely venture out again.

Besides being homebound and having to go back to homeschooling, one of the most significant changes that COVID-19 has brought to our life is the temporary halt to going to the CF Clinic in person for Bennett's routine care.

Thankfully, we just had a CF appointment a month ago and Bennett is doing well.  But, depending on how long COVID-19 goes on, we could find ourselves, like many others, having a CF Clinic appointment from our living room.

Since the COVID-19 virus is overwhelming hospitals and risks the health of people with CF, the CF Foundation is advising people with CF to stay home, even for routine CF care visits.  (CF doctors are currently working on providing routine CF care through telemedicine/telehealth.)

I'm not totally sure how telemedicine is going to work (how exactly does a doctor listen to your lungs through a computer, for example?).  But I'm looking forward to trying it out.  I most definitely want to keep Bennett well and *not* go to the hospital right now.

With that in mind, I've been trying to consider ways to help Bennett stay well at home during COVID-19 and to prepare for telehealth CF Clinic visits.  Here's what I'm doing these days:

1.) We aren't slacking on CF care one bit.  I am hopeful that Bennett won't get sick with COVID-19.  But, just in case he does, I want to make sure his body is in the in optimal condition to fight off infection.  Therefore, we are doing our CF treatments religiously and being home is allowing me to increase his g-tube feedings so increase his weight.  I also vigilant to make sure Bennett is getting outside to run and play and use his lungs as much as possible.

2.) I'm tracking Bennett's daily symptoms using Folia.  Foliahttps://www.foliahealth.com/, a free app for caregivers of children with special needs, allows you to track anything you want.  I track coughs, nausea, stool consistency, tummy aches, headaches and how adherent he is to his treatment regimen so that I can give a consistent report to my clinic about how he's doing.  This is particularly helpful to have should Bennett get sick.

3.) I'm using a scale to capture Bennett's weight over time.  I am weighing Bennett once a month just to make sure he's getting good nutrition while quarantined and not losing weight.

4.) I'm using at home spirometer to capture his PFTs.  PFTs are typically taken at the CF Clinic every three months when well and more often when sick.  Right now, I am using a home spirometer once a week to get some baseline data and to teach Bennett how to get used to a home spirometer which is slightly different than in the clinic.  My goal is to have home PFT baseline data to use so I can compare should he get sick.  I trust my CF Clinic's PFT machine more, but in absence of clinic PFT data, I appreciate having our home spirometer.

5.) I'm using a thermometer to check for fever as needed.  Since we're fully isolated and I am not worried about Bennett getting COVID-19 right now, I am checking for fever only as needed.  However, if he was being exposed to anyone coming or leaving the home, I would check his fever daily.  We know a very early symptom of COVID-19 is fever.

6.) I will use our home oximeter to capture Bennett's oxygen levels if he gets sick.  Low oxygen levels isn't typically a problem for Bennett.  But an oximeter can be helpful when breathing issues arise.  I will check Bennett's oxygen levels if he was to show signs of being sick.

7.) I have a stethoscope to listen to his lungs...but it's unlikely to ever be much of a benefit to me as one typically needs a trained ear to put it to good use.  Nonetheless, I like having it.  Maybe it just makes me feel good to know I could listen to his lungs if I wanted to.  The reality is that in the worst case scenario, it might allow me to have a doctor friend listen to his lungs if I was really worried about something in the middle of the night.  But, in general, I don't think it'll do much for me.

8.) I'm staying on top of medication and formula refills.  Since the pandemic can make the most random things scarce quickly (think toilet paper), I try to stay on top of my medication refills for fear one morning I'll wake up and find one of Bennett's medicines is out of stock or on backorder.

9.) I'm keeping Miralax stocked.  People with CF are at risk for bowel obstruction.  In fact, it's probably the number one thing that could send Bennett to the ER so I always keep Miralax stocked and use it (under doctor's guidance) whenever I think he might be getting backed up.

10.) I change out Bennett's masks and nebulizer cups every three months.  I typically change out Bennett's nebulizer cup and masks at each CF Clinic appointment.  This time, I've written it on my calendar to change 3 months since our last appointment.  And I've written another date 3 months from that to remind myself.  I typically keep 2.5 days worth of masks and cup on hand because that's how many can fit in my sterilizer.

11.) I change out Bennett's g-tube button every six months.  It's easy to forget to do but I try to remember to change Bennett's g-tube button two times a year so that it doesn't become an emergent situation.

12.) I'm stay connected to the CF community online.  Staying connected to the CF community makes me feel much less alone and allows me to get quick answers to things without needing to bother my CF Clinic.  If I need something that an expert, such as a doctor, needs to advise me on, typically the CF community will encourage me to ask my doctor.  But often I just need a quick answer from someone who has been there before and the CF community is there 24/7.

13.) I'm staying connected to my CF Clinic.  I know my CF Clinic is busy right now.  I also know they will likely just get busier in the coming weeks.  But that won't change my communication with them.  I will continue to reach out to them via email or MyChart as I need and will continue to let them know of any changes I make at home.  CF Care is a partnership and I want to make sure I'm being a full partner with my team in Bennett's CF Care, even if my team can't get back to me as quickly as they typically have in the past.

14.) I'm always looking for at home protocols for CF Care from other CF families.  Sometimes other CF Clinics put out printed at-home protocols.  I really appreciate being able to learn from how other CF Centers coach and support their patients.  I try to share what my clinic does with other families.  I'm always looking for good at-home resources.

Although these are things I'm doing, there are some things I can't do and things I don't know how the clinic with will do them outside of a hospital/clinic either:

I don't know how CF Clinic throat swabs will work with regard to CF telemedicine.  But I'm hoping to eventually be able to throat swabs at home, especially since we're 2 hours away from our CF hospital.  I suppose if we can do drive-through COVID-19 tests, drive through throat swabs could one-day be an option?  I'll wait to hear from my clinic on that.

I also don't know how bloodwork will be done at home.  Some people have talked about having home nurses do the bloodwork.  But with COVID-19, I don't want to even risk that.  So, we'll see.  Typically Bennett doesn't need bloodwork but once a year so hopefully we'll be back in the clinic for that.  The same goes for an Oral Glucose test (OGTT).

And, how about X-rays?  X-rays will always require a clinic visit.  Thankfully, we grabbed ours last month at clinic so we have a recent one completed.  But, I'd probably opt for a small clinic or urgent care near home at this point if we had to get an x-ray...anything besides going to the hospital.  In absence of sickness, x-rays are typically done annually for CF patients.

I'm curious if there are other things I've missed about doing CF care at home and CF Clinic via telehealth during COVID-19.  If you know of anything I should be thinking of, please let me know!  I love crowd-sourcing and learning from others!

15 March 2020

Dear Teachers: Thoughts from an COVID-19 At-Risk Family Just Trying to Survive


I received the first email from one of my children's teachers today regarding school work that will soon be sent home.  The email was a "heads up, it's coming next week" email from Oliver's teacher, which I appreciated.

I replied to the email with thoughts from a mother dealing with a child with special needs during this national emergency.

I wanted to share it on my blog because I hope other teachers will read it.  The point of the email: Educators, be compassionate with your expectations, our children and families are just trying to survive right now.

****

Dear Teacher,
One thing I wanted to share with you, and all educators, who are currently making lessons plans is right now is: please be mindful that although children are at home, many are under duress in the current situation. Adults' schedules have changed.  Adults' financial situations may have changed. This naturally causes stress among the adults in the home and therefore is stressful to the children.

In our particular case, since Oliver's little brother's underlying respiratory condition cystic fibrosis means COVID-19 could be fatal to him, our family is now fully quarantined (and plan to be for at least 6 weeks).  This means that we are having to ration food and supplies to make sure we can make it as long as possible without having to risk exposing Bennett to COVID-19.  My children spent much of this morning just grieving - grieving over their Spring Break trip which was cancelled, grieving the loss of their normal schedules, grieving the loss of being able to see their friends and teachers at school and grieving loss of not being able go about life as normal.  

Oliver will have no problem with any of the assignments you give him.  I know he will welcome them from his favorite subject!  But I would very much appreciate if you would share this sentiment with other teachers.  Children in distress will struggle to learn and retain new information.  We know this is brain science.  So many of America's children are in distress right now.  

It's also worth noting that, although children may not currently be in school, they are most certainly learning.  These days they are getting a front row seat to learning "supply and demand," learning how viruses work in the body, learning about countries around the world and learning how pandemics affect economies, etc.  There is so much learning happening, even in the absence of worksheets.  

If teachers would be compassionate towards families in crisis and children in crisis when they send work home, it would be so greatly appreciated.

That said, we look forward to hearing from you and to the work you will send.
Thank you,
Breck Gamel

11 March 2020

Figuring Out How to Keep Bennett Safe Through the Coronavirus


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.

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.

04 March 2020

Infection control with COVID-19: What cystic fibrosis has taught me




Social media and the news circuit is filled with almost hourly updates of the spread of COVID-19 in the US.  It can be very scary for anyone, but especially for those of us who have loved ones in the most vulnerable populations.

COVID-19 scares me.  But, let's be honest, so does everything when you have CF.  The flu. Colds. Coughs. Sick people. Hospitals. Large groups of people. Flying. Pets. Dirt. Hot tubs.  I've gotten very used to being scared of things I can't see: bacteria, viruses, illnesses.  Those are kryptonite to those with cystic fibrosis.

When you live with CF, the common rhinovirus can take away your lung function and put you in the hospital, so you learn to live life with an elevated level of fear.  You also learn very quickly ways to keep yourself safe.

I thought today how strange it feels that the rest of the world is now talking about "infection control," something so commonly talked about in the CF Community.  Since people with CF can make other people with CF sick, "infection control" is super important.  At the hospital, people with CF are restricted to stay in their rooms without special permission because of "infection control."  People with CF can't even be in the same classroom at school because of "infection control."

As annoying as this is, when you have CF, I have found myself quite thankful for it today as I hear about COVID-19.  While these things are not fail-safe, they are second nature for our family.  For that reason, I thought I should share some of the things we do nearly daily to keep Bennett safe from respiratory viruses, in hopes others might feel comforted there are things they can do to keep themselves safe too.

Here are just some of the things we do in our family to keep Bennett safe from dangerous respiratory viruses:

1.) Wear a mask in the hospital (masks actually don't keep you safe but it does signal to others to keep their distance)
2.) Stay 6 feet apart from others who might get you sick
3.) Sanitize surfaces touched by a potentially sick person (Lysol wipes are our friend!)
4.) Stay out of hospitals/clinics/pharmacies at all costs
5.) Consider withdrawing from school when sickness is circling
6.) Drive, rather than fly
7.) Stay away from crowds
8.) While in the hospital, insist doctors and nurses wear gloves and a plastic gown when they care for you (we ask for them to wear masks during flu season)
9.) Don't be afraid to ask clinicians sanitize stethoscope or any other medical device before it's used on you
10.) Sanitize nebulizer cups and plastic breathing masks before treatments
11.) Increase breathing treatments and chest therapy when sick
12.) Prioritize sleep when susceptible to being sick
13.) Stay hydrated when susceptible to being sick
14.) Pay attention to good nutrition when susceptible to being sick
15.) Make sure meds are not missed
16.) Use good hand hygiene (I keep hand sanitizer on me all the time)
17.) Don't share toothbrushes, eating utensils or drinking cups; wash clothes, towels and sheets more frequently
18.) Don't shake hands, hug or kiss when sick
19.) Don't share common objects with those who are sick or might be sick (such as pens, door handles, computers)
20.) Refrain from being together in enclosed poorly ventilated places such as a car.
21.) Stay away from anyone coughing or sniffling and ask others to identify you as soon as they start feeling symptoms so you can stay away
22.) Quarantine sick family members to one room or part of the house

Here's what the CF Foundation recommends for infection control for people with CF.  It is not written with COVID-19 in mind. https://www.cff.org/Care/Clinical-Care-Guidelines/Infection-Prevention-and-Control-Clinical-Care-Guidelines/Infection-Prevention-and-Control-Clinical-Care-Guidelines/

Also, here are some tips for those trying to stay well from any respiratory virus: https://www.cff.org/Life-With-CF/Daily-Life/Germs-and-Staying-Healthy/How-Can-You-Avoid-Germs/

The CF Foundation just put out an announcement about COVID-19 today. See here.

It is my desire for the healthcare and research community to learn more about infection control.  While we know some about how viruses spread, there is a lot we don't know.  I am very hopeful that this new spotlight on how respiratory viruses spread and how to keep yourself safe will bring insights and understandings that will benefit CF community.  While I am confident COVID-19 will eventually be a thing of the past, the CF community will have to continue to think of infection control until there is a cure for CF.