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While keeping a chart at home for your medically complex kid isn’t necessarily required, it is a powerful tool that makes it simple to spot trends or quantify issues. It allows you to be data driven, and speak a language your child’s medical team will find easy to understand. It prevents personal opinions and emotions from coloring the situation, letting you focus on the facts.
I find that charting works well for my family and Gus, especially because he is non-verbal and unable to give me some of the typical clues and reactions to help me understand what’s going on. That said, I know many families who don’t chart and it works well for them. There are no “correct” or “right” answers; sometimes, it just takes a little experimenting to figure out the best routine for your unique situation. The goal is to find the approach that gives you the best balance of great care for your child and quality of life for you and your family.
Here’s a scenario where charting can help: You might feel like enteral feeds aren’t being tolerated as well as usual. If you have a chart, you can go back, verify that feeling with evidence, and bring real numbers to your clinic appointment (“30 ml/hr for 10 hours is usually tolerated well, but we’re not getting to 15 ml/hr and having to stop at 8 hours with distention and discomfort. This has been happening for X number of days and started right after Y event.”).
If you decide to try and keep a medical chart for your child, it’s important to determine the metrics that drive their care. For example, with Gus — as a GI and short gut kid — the holy grail of our charting process are his “ins and outs,” nutritionally what goes in (TPN and/or tube feeds) vs. what comes back out (output) and how it compares. For a child with another diagnosis, the most important metrics will be different.
Some universal things to track might be meds, pain, tantrums, fever, vomiting, and sleeping habits/patterns. To figure out what else to track, pay attention to the questions asked during clinic appointments. If they always ask, “How many times a day or week is your child having vomiting episodes,” consider tracking that.
It’s also helpful to have your child’s team give you parameters and develop a protocol to determine what’s going on and what intervention may be needed. For example, if there is less urine output than usual, I can go into my chart and quantify that, which would prompt me to follow the protocol we’ve established with my child’s team. For example, I might call my team, use PRN IV fluids, or straight cath. It’s also very important to have guidelines for what constitutes a true emergency and requires a trip to the hospital.
Essentially, I set everything up for speed. To organize, I use a spreadsheet with four main columns:
I start each day with the basics already printed out and just fill in the details. To be clear, this is a printed, paper chart at my house. The nerd in me wants to go digital so I could easily search the chart and make cool graphs, but I haven’t done that yet. However, the chart I’m providing for download is set up to auto-calculate in case you want to utilize that feature.
Every scheduled med is printed with time given and dosage. If we’re titrating dosage on a med, I’ll leave space to write in the dose. Then, all I need to do is check off what’s given. If a PRN med wasn’t given, I put a line through it. For less frequent items, like changing a medication patch once a week, I have a spot on the side for the date it was last changed.
This is an especially great system if you’re sharing care responsibilities with a spouse, partner, or in-home nurse. That way there’s never a question of whether something was given or not.
Larger events go on my main Google calendar, including dates for GJ change, dental cleaning, iron infusions, etc. I also always make a calendar reminder to schedule the next appointment for those longer term events so they don’t fall off the radar.
If you want to start charting, I hope this helps, but remember, like anything else, you need to figure out your own patterns, rhythms, and processes. If charting isn’t for you, that’s OK, too! All I know is that with enough sleep deprivation and stress, which are nothing more than facts of life with chronic illness, my memory has failed me more than once! A comprehensive chart is a fantastic crutch for human fallibility, and it allows you to provide great care for your child and great quality of life for you and your family.