A conversation with Nurse Wilson on being both a nurse and a mother during Jake’s recovery, the gaps families face after discharge, and why caregivers need to be included in care.
Suggested image: Kristen Wilson, RN
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Nurse Wilson used that phrase herself: she "knew enough to be dangerous."
At the first hospital, while Jake was being prepared for transfer, she overheard that fresh frozen plasma had not even started thawing because the order had not been processed correctly. She knew exactly what that delay meant and nearly went to the blood bank herself.
Later in the PICU, she watched Jake's oxygen saturation fall while he was clamping down on his breathing tube. When no one came in quickly enough, she went into the hallway for help and ended up doing a sternal rub herself.
She was very clear that she remains grateful to the CHOP team that saved Jake's life. Her point was not that individual clinicians did not care. It was that being a nurse meant she could see every part of the system while also being a scared parent.
When I asked Nurse Wilson where care breaks down, she kept coming back to silos.
One specialist handles one problem, another specialist handles something else, and the family is often the only group trying to connect all of it.
This reminded me of my conversation with Dr. Matthew Jaffa, who talked about discussing marriage and family problems during neurorecovery visits. Nurse Wilson's reaction was basically: of course. If you are treating the person, those things are part of the problem too.
She also talked about time. Jake had a primary care physician the family trusted because he listened and included them. When visits were shortened from thirty minutes to fifteen, that kind of care became much harder. Her point was simple: complex brain injury care takes time.
One thing Nurse Wilson said surprised me. During Jake's first two years at home, there were times when she felt relieved when he had to go back into the hospital.
Not because she wanted him there. It was because, for a few days, someone else was watching him.
At home, she was constantly deciding whether a new symptom mattered, whether a change was expected, and whether she needed to call someone. Then came the portals, phone calls, callbacks, insurance questions, and figuring out who could actually answer.
Nurse Wilson has spent her career helping other people navigate care and still found this exhausting. She kept asking the same question I did: what happens to a family that has never dealt with healthcare before?
Nurse Wilson described isolation as physical, cognitive and psychological, and social.
Someone may not be able to drive. They may be exhausted, anxious, depressed, processing things more slowly, or dealing with mood changes. At the same time, school, work, friendships, finances, and independence can all change.
What mattered to me in that explanation was that these things happen together. A survivor may look physically much better and still be struggling with the parts of life that are hardest to see.
Got ABI started after Nurse Wilson kept looking for resources for Jake and was eventually told, essentially, that she had already found what was available.
Jake was still isolated. He was a young adult, and the usual support groups were not built around people his age or the things he wanted to do.
So they made something different: bowling, game nights, barbecues, Discord chats, and low-sensory walks. People can talk about brain injury if they want to, but they can also just spend time together.
The same space helps caregivers. Parents compare notes about doctors, therapies, insurance, and what is happening at home. Sometimes nobody has a solution. Nurse Wilson said that sometimes what matters is simply having another person say, I see you. I am dealing with this too.
When I asked Nurse Wilson what she wants future physicians and nurses to understand, her answer was: include the family.
She is not saying every parent should automatically stay in every visit. She understands privacy and the importance of independence for a young adult.
Her point is that brain injury can make the situation less straightforward. Someone can sit through an appointment, look completely attentive, and then leave without remembering the plan.
Her suggestion was very practical: ask the patient whether they want their support person to stay. Do not assume either way.
What I kept thinking about after this conversation was that Nurse Wilson already knew healthcare. She knew the language, the system, and how to advocate.
And it was still difficult.
That is what makes her perspective important to me. If a nurse and case manager can feel overwhelmed trying to coordinate care for her own son, then we have to think much more seriously about what we are asking families to do after discharge.
Her answer was not complicated: communicate with each other, include the family when the patient wants them there, and do not stop paying attention once someone leaves the hospital.
No one fixes this system alone. The work is to start the conversations between everyone on the team, make the extra phone call, and step in when a patient is falling through the gaps.
Nurse Wilson, RN · Co-Founder, Got ABIEmpower Through Recovery supports individuals with acquired brain injury navigating life after clinical rehabilitation ends, the post-acute gap that Nurse Wilson's experience and Got ABI's founding are both a direct response to.
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