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.  Folia, 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!

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