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Complex Care Reimagined

A nurse care coordinator shares her story.


I work in the Special Medical Programs department of Amoskeag Health, which means that many of my patients are young children with complex care needs – these children require extensive services that are often not covered by insurance. Many require special accommodations and are at a high risk for falls or seizures. It’s nearly impossible for parents to work and balance these children’s care without help.


Thankfully, Amoskeag Health supports these families, helping them learn how to properly care for their children; how to navigate insurance and the health care system; and how to develop mental coping skills to combat the exhausting emotional toll of their reality. I could fill an entire book with pages of the amazing work our organization has done, but one young woman’s journey touches my heart so much that I want to share her story with you today. I want you to take a moment and step into her shoes.

 

Imagine that you’re a single mother of a five-and-a-half-year-old boy with cerebral palsy and seizures. 


You work 25-30 hours a week as a part-time LNA 25-30 and balance full-time nursing classes at a community college. Your child is nonverbal and must be fed through a G-tube – not just anyone can care for him. Thankfully, your grandmother moved to America with you, so even though she’s a bit older, she can help while you attend classes and work. However, your third-floor apartment is hard to manage. Your son is wheelchair bound and there's no elevator. It’s getting harder and harder to get him up and down the stairs.

One day, your son has to be hospitalized and intubated because of a severe respiratory infection. He'd just recovered and come home. Then, you start hearing about COVID-19. You’re terrified. If your son contracts COVID, it would be life threatening. You still have to work, so you try to be as careful as possible, but every single day you’re filled with anxiety and fear.


Then, your worst fear is confirmed: You test positive for COVID-19.


In addition to losing your only source of income while you recover, you must suddenly quarantine away from your child for his safety. You have to pause college. Your grandmother doesn’t speak English, and your son still has extensive health needs. How on earth will you get through this?


Thankfully, you have a support network: Amoskeag Health. You called your nurse coordinator and she helped you make and organize appointments, even connected you with interpreters for your grandmother. She helped provide grocery deliveries, and any time you felt anxious or overwhelmed, you called for moral support. As you focused on recovering, you knew that your son was in capable hands with people who understand his complex needs.


After your recovery, Amoskeag Health worked with you to file an application for a housing voucher from NH Housing to secure a first-floor apartment. With your son’s care managed so well, you resumed college courses and are on track to graduate in December.

 

Now, I want you to step back into your own shoes and imagine what might have happened to this single mother without the support and care that Amoskeag Health provided. Take a moment to really visualize how that situation might have played out: A sick, single mother might have found herself homeless, struggling to care for herself, an aging relative, and a wheelchair-bound child with critical medical needs and with whom she could not be near. That jolt of fear and anguish over the “what if” scenario is what keeps me committed to the families I serve.


Her success story reminds me every single day that the work I do matters, and I hope that she reminds you that your continued support of Amoskeag Health makes an inexplicable, lifechanging impact. Thank you for allowing me to continue changing lives like hers.


~A.B., Amoskeag Health Nurse Care Coordinator



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