Erica and Shaun learned quickly what works well during hospitalizations and what doesn’t during the 526 days they spent inpatient with their son Westly.
After 526 days spent inpatient with their son Westly, Erica and her husband Shaun are alleged pros. They learned pretty quickly what works well—and what doesn’t.
I met her a year ago when she sent me a copy of her Extended Stay Notebook, a spiral bound notebook meant for tracking medical happenings, and staying on top of things while at the hospital. She and her husband co-created it, in hopes of giving other parents in their situation the confidence and know-how needed to progress safely towards discharge.
In this episode, we chat about her inspiration for the creation of the notebook, and she gives us her top three pieces of advice as we navigate hospitalizations with our children.
During the 526 days spent inpatient with her son Westly, Erica knew that there had to be a purpose for all the struggle.
A devout Christian, she often felt the reassurance that some good would come out of it at a spiritual level. Now in hindsight, she sees many blessings that are hers because of it. The Extended Stay Notebook she cocreated with her husband Shaun is an obvious one.
Erica told me that one of her “God-given gifts” is the gift of organizing. This coincided beautifully with her hard-earned, extensive knowledge of what works well during hospitalizations, and what doesn’t. It’s her hope that this notebook will guide other parents in similar situations through the process in a way that instills confidence in their role in the medical team.
Among many other things, there is a section full of blank daily sheets for filling in updates and notes each day during rounds. During their stay, when only one parent would be sitting in rounds, the other would take a quick photo of the filled-out sheet and send it to the other so they could stay on the same page.
There were many times that the detailed record-keeping on their part played a key part in keeping Westly safe and healthy—like the time a doctor suggested a medication for Westly and Erica reminded him of the exact date they had already tried it and the exact negative side-effects he had experienced. They quickly moved on and tried something else.
The ability to speak their opinions clearly and to have data to back them up helped Erica and Shaun advocate for Westly and really become an integral part of the medical team.
As Erica pointed out,
“Honestly, you are the only consistent person that is there. Yes, you can have the same nurse three days in a row or the same attending physician the whole entire week. But you, as the parent, are the only one there every day. You know your child.”
Our role is key, and it helps so much to have the right tools. The Extended Stay Notebook was created to be that tool that every parent needs when navigating hospitalizations.
Watching others utilize the notebook and the impact it has had on them during some really dark times, has been a gift back to her. It is their hope and goal for every parent who faces hospitalizations, and especially long ones like theirs was, to have access to this resource. That is why on her website, there is the option to gift a notebook to a parent who needs one, or to donate to the scholarship for parents who apply for one. What a practical and powerful gift to give others!
As Erica and I chatted about their hospitalization, she spoke of the importance of what they call “flexible consistency.” Aware of the benefits of having consistency, especially in tumultuous times, Erica and her husband tried their best to create that consistency, while also being flexible in those goals.
Their other three sons at home knew they could count on dinner every evening.
Sometimes it was one parent or the other. Sometimes it was auntie. Sometimes it was a couple hours late. But it always happened.
Creating consistency that had flexibility was huge for them. Because if they had attempted the consistency without the flexibility, it would have added more stress. As anyone who’s experienced it knows well, hospital life is crazy and chaotic and calls for a whole lot of flexibility. And fighting it is futile.
Erica learned so very much from her months spent with her son in the hospital and is dedicated to teaching others so we can be better equipped!
For which I am so grateful.