Practical Tips for Home IVs as a Parent

As more people with CF make the choice to start families, they’ll face the unique challenges of wearing two hats at once: patient and parent. Being a parent with CF is often a juggle, managing both your own care and your children’s. Add home IVs into the mix, and it can feel quite overwhelming. I know because I have danced this dance too many times before. I hope a few practical tips forged from my own home IV experience might be helpful for those navigating new waters.

Do the fluids

One of the really challenging aspects of doing IV antibiotics as a parent is staying hydrated enough to keep your kidneys healthy and happy. IV antibiotics are very hard on the kidneys, and drinking extra fluids is essential--something I epically fail at. Personally, I find it really helpful to ask my doctor for home hydration. Hydration is just saline in a liter bag that hangs on an IV pole and is infused by gravity. You can hook it up around bedtime or even overnight and ensure that you’re helping flush the drugs out of your kidneys.

Ask for home nursing

A normal part of being on home IVs is the lab work and monitoring required to ensure the drugs are being tolerated and safe. At my clinic, we are asked to get blood work and a urinalysis Monday and Thursday. The patient can either run to the lab 15 minutes away or receive home care nursing, which comes to your house and does everything there. With kids, home care nursing takes some pressure off making it to the lab between school and nap schedules. Ask for the help!

Order out or meal train

No one, absolutely no one, has energy to cook in the midst of home IVs. Give yourself some grace and order out more than you’re used to if the budget allows. The other way to save energy while feeding the family is to ask your friends and loved ones to organize a meal train. It’s hard to ask for help, but most of the time, people are happy to help when they are made aware of how they can. Even dinner every other evening is enough to take the load off myself and keep my family fed. I always appreciate the help (and find outside cooking a good way to gain some weight).

Repurpose diaper caddies

Being successful at home IVs as a parent really is dependent on convenience. The more accessible your supplies and medicine, the more convenient the schedule, the more likely you are to manage home IVs and get better. A genius tip for organizing supplies is to repurpose diaper caddies as IV supply stations. Keep a caddy on every level in your house filled with saline flushes, heparin, and alcohol swabs ready to grab. Make it easy on yourself to get better!

Use a hanger on the go

The one downside of tip #1 is how freaking annoying the home care IV poles are. Sure, home hydration is a lifesaver, but the poles expected to hold it up often fall down. In real-life situations where I need to move around while receiving hydration, I use a hanger to hang the bag on whatever is nearby: light fixtures, curtain rods, or coat hooks. Get creative! Just make sure the bag is hung above your heart to ensure it infuses at the proper rate.

Be honest about schedules

Every family has a different schedule they need to work around. Be open and honest about which IV schedule would work best for you and what you feel you can manage. For CF exacerbations, different medications can be infused every 24 hours, 12 hours, or 8 hours. My care team knows that infusing 3 different meds every 8 hours, where I have to wake up in the middle of the night to hook up IVs with two little kids, is asking a lot. They are always flexible and help me work out a treatment plan that allows me to sleep through the night and hook up 3 meds every 12 hours when possible. It’s the type of schedule that is therapeutic but manageable.

Set alarms

If you’re forgetful like me, adding on the mental awareness IVs requires can be difficult. I often expect my internal clock to let me know when it’s time for IVs, but that’s just not a smart idea as a parent because more often than not you get busy. Instead, I find it helps to set alarms for everything, not just the medications themselves.

My iPhone reads like this:

830am- Hook Up Linezolid

9:45am- Hook Up Cefephime

11:15am- Hook Up Tobraymycin

12:00pm- Preschool drop off

12:30pm- Flush and Unhook

2:00pm- Work call

830pm- Hook Up Linezolid

9:45 pm- Hook Up Cefephime

11pm- Flush and Unhook

I really can't forget a thing when my alarm is sounding off all day long. It is a means to an end. Home IVs can be stressful, busy, and an interruption to normal life as a parent. However, I know that you can do it! Do you have any tips for surviving parenthood and CF? Share with us below!