When my daughter, Shiloh, was diagnosed with cystic fibrosis almost two years ago, I really struggled with keeping up a routine and getting all her new treatments, medications, and medical equipment cleaned and prepped. This caused me to miss some of her treatments (which I would NEVER condone, but a new diagnosis and depression add up quickly) and made our lives even harder.
One thing that has made this journey easier is organization. In fact, I now have CF stations set up in the kitchen and where Shiloh does her treatments.
- Station One: The Containers
Although we've always kept most of her medications in the kitchen, I used to struggle with the storage and ease-of-access to her medications. Then, I found clear containers made for tools and crafts that fit her daily needs perfectly.
The containers are divided into groups: daily meds, syringes, probiotics, toothbrushes (which is a whole other article), and extra nebulizers. Having everything visible makes her daily routine streamlined and simple. - Station Two: The Calendar
Next to Shiloh's daily medications, we have a treatment calendar. Making this addition to her medical care has been so easy and beneficial.
On the calendar, I mark down how many treatments we have done each day, future appointments, and any symptoms that may arise (i.e., fever, vomiting, tummy aches, etc.). This allows me to track any changes in her health and keep her care team updated and informed.When she is on antibiotics, we also track when she receives her doses by making a chart directly on the bottle. This makes giving her doses easier -- especially when they're being administered by multiple parents.
- Station Three: The Cart
Another CF station we have is her treatment cart. We have a three-tiered cart set up with her vest, compressor, medical-grade disinfecting wipes, tablet, and inhaled medications. This station helps treatments run as smoothly as they can when you have a toddler with CF.Cystic fibrosis is a journey that you don't always want to be on. But, staying organized on the journey makes it just a little easier.
