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Having a feeding tube qualifies him for some amount if hourly, in-home nursing care via Medicaid waiver. The social worker connected to his pediatric feeding clinic / gastroenterologist would know if he was getting these services. If so, when was the last time he had services?
Typically, families are allowed a certain number of care hours per month and can structure it to best suit their needs. There is, however, an acute shortage of nurses doing this type of work because of the abysmally low pay. I have always done this type of work as a side gig (except I take care of home ventilator kids) and the pay was $12-15/ hour LESS than the hourly rate at my hospital gig*. Here's an excellent overview of the situation: Gasping for Care: Home nursing shortage impacts most vulnerable Hoosiers
*I did the work because I love the families and the ability to focus on one kiddo and do all the fun stuff that happens when they live at home instead of a hospital or nursing home. Money's not everything!
Typically, families are allowed a certain number of care hours per month and can structure it to best suit their needs. There is, however, an acute shortage of nurses doing this type of work because of the abysmally low pay. I have always done this type of work as a side gig (except I take care of home ventilator kids) and the pay was $12-15/ hour LESS than the hourly rate at my hospital gig*. Here's an excellent overview of the situation: Gasping for Care: Home nursing shortage impacts most vulnerable Hoosiers
*I did the work because I love the families and the ability to focus on one kiddo and do all the fun stuff that happens when they live at home instead of a hospital or nursing home. Money's not everything!