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What exactly should we expect? We have been told we should be getting it and I feel like we need more help. Right now though they can't find an agency that serves our rural area. I'm wondering though, what could we expect? How many hours? What do they do? Our little one is has a g-tube, needs deep suctioning sometimes, lots of seizures, and not mobile at all (although the child is also still fairly small so this isn't a big issue yet).
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We also live very rural, we have never had nursing help for our AD. When she came to us as a foster placement we were told up front that although she qualified for nursing, they have a lot of trouble finding an agency who will come our here. My daughter is a victim of Shaken baby syndrome and also suffered a hypoxic brain injury, she is g-tube dependent, requires suctioning, is nonverbal, non ambulatory and blind with global developmental delays. Even though she is adopted now, she still qualifies for nursing, but we have never had a nurse who is willing to come out this far, and this far is only 45 minutes from the city where the agency is.
momof9 thanks for sharing. Sounds similar to our little one as far as the amount of medical needs and about how far we live from a town that should have it available. I think we can make things work without nursing but it sure seems like it would be helpful. We may need more respite support from our agency if we can't get any in home help through insurance though. I guess it is good to keep in mind though that the respite through the agency wouldn't stay if we were to ever adopt.
I have nursing for both my BS and AS. Both have trachs and one has a Gtube. Maximum amount typically covered is 16 hours a day 7 days a week. We use 12 hours a day 5 days a week (while I am at work and the kids are at school). Medicaid pays while they are at home, school pays while they are at school or on the bus.What do they do? All medical care and care for the children's needs. For us they do all meds, stoma care, feeding, bathing, medical equipment care, change the bed, take out the trash at the end of their shift and basic child care. Mine sometimes do laundry for the child as well but I never require that. Honestly, the more they can do and document, the more you will be able to keep them as a resource.What exactly should we expect? The good the bad and the ugly. We have had some seriously wonderful nurses that have literally become part of the family. Some of my older son's nurses were with us for 5 years or more. He still calls one of them that retired and moved away. Some of the nurses have been nightmares. You have to manage them like any other employee but remember that they don't work for you, they work for the agency. So although you can ask them to change certain things, you also need to let their supervisor know. They also can't do anything medical without a Dr. order so a good Dr. that can work with you if there are problems is a must. For instance, my youngest son was being suctioned so much his trachea was bleeding and the nurse would "reposition" him so much at night he wasn't getting enough sleep. We literally had to have orders written not to suction unless (list reasons to suction) and to leave him alone at night unless (list medical reasons to intervene).Other things. You can request to interview prospective nurses before they come into the house. But you may not have many choices in the staffing in your case. Make sure you communicate any needs/wants. They won't know if they are doing something that is terribly annoying unless you tell them. Be kind and understanding, let the little things go, but if there is a problem, address it. Don't let things build up.
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