Preparation Is Key
One thing that I have come to find extremely helpful as a medical mom is taking time to prepare for every appointment and documenting what is said and happening from every appointment. A lot of our appointments are virtual or on the phone now with the global pandemic, which I have found documenting to be even more helpful. I ALWAYS have a notepad and pens at the ready to write things down because it is always so hard to remember once the conversation is over.
I keep journals for both of my boys, which is where these notes end up going so I can look back on them at any time. In them, I write every down every detail of what was discussed, with who, and what the next steps or follow up will be. This has been incredibly helpful when it comes to troubleshooting something with one of the boys.
For example, I had documented in Dylan's journal that in February 2022 he was admitted in BC Children's Hospital for failure to thrive and there was a mucus issue he was having, that was also contributing to his vomiting. I have all the conversations I had with doctors documented, and scan results, and what the next steps were. We figured out some of the issues at the time but the mucus was something no one could explain and stuck around for a few months after. Fast forward to April 2023. Again, Dylan was having a mucus issue and had for a little while, which was provoking his vomiting to be worse. I remembered we investigated a lot the year before and went back to his journal to read all the notes over the spring months. After discussions with his nephrologist who also remembered the mucus issues the year prior and went back in her notes, we figured out Dylan may have seasonal allergies, just like Mason, as this mucus issue seems to be a problem when Mason’s allergies flare. We started Reactine and BAM! His mucus was thinned and vomiting subsided. This was another key moment in being thankful for all my documentation.
This was not the first time that it's been overly helpful. When we have an upcoming appointment for either of the boys, I always go back and read through the notes that I have taken from when we last saw that doctor to now. I have found it helps make sure that things are not lost, or miscommunicated, especially when there are multiple doctors in different locations working with your child. It's very easy for reports to not be shared, or be missed that could be important in your child's care. It's also been helpful for the longer follow ups, which are often Mason’s appointments now that he is stable, that don’t need to be booked again for 6-12 months, to remember what was said in the last appointment and when we need to see them again. Because if it's not an appointment booked already, it's very easy to forget about!
To any medical mom, especially new ones, I highly recommend getting a journal and write everything down! It may seem like a lot at first, but it can help a lot in certain situations. Especially if there are multiple doctors, as you can help fill in the gaps so there is no miscommunication, or vice versa. They can fill in any gaps for you that may have been missed or misunderstood.
