What Is It REALLY Like to Have Nurses in Your Home?

Article continued from Private Duty Nursing continued from page What is it? Why you need it? And how to get it

So, what is it REALLY like to have nurses in your home?

It really is a double-edged sword. We love it and hate it all at the same time. You will need to become a boss. You tell them what to do. You make up a schedule for them to work. You interview people that may want to work with your child. You have to deal with different personalities the same way you would at any job. You have to keep track of a lot of paperwork. You have to have a system in place for medications, therapies, charting and other medical supplies. The nurses can help to give you ideas and direction since this can be overwhelming.  You have to find a balance between family and nursing care. You have to know what you want, even though you may not really know what that is. We went from having no help to having 20 hours a day of help, and we had NO IDEA what we wanted or needed them to do.

There is going to be an adjustment period. Handing over the reins to a complete stranger is hard. You will feel guilt about doing it. You will not really know what to do with yourself and that little extra free time that you now have. You will want to watch over everything to make sure they are doing it the way you want them to. You will want to go to bed early, but feel weird about having someone in your house while you sleep. You may be inspired to FINALLY take care of yourself, just like everyone has been telling you to do. Whether that means going to work, getting a haircut, or just doing everyday things like grocery shopping; you can do that and not feel guilty about it. These people will be with you and your child for many hours every day, so you have to like them, too. These people are qualified and know what they are doing. You will have to show them some specific things about your child, but they do have a nursing degree and can handle whatever your child needs. You have to trust them.

We have only had private duty nursing in our home for a few months and we can already see a change in our son. We recently went to Special needs clinic where we see a bunch of doctors all on one day. Our son was quite a show off for them, as usual. They were all impressed with his head control, hand movement, eating by mouth (he is mainly g-tube fed for now) and his leg range of motion had improved by 10 degrees! We were also concerned with his hip being in the joint so we had an x-ray done and they look better. For now, we are not looking at doing surgery on his hips! This is all because our son has been getting the care that he needs and the therapies and treatments that he needs. Because we finally have the help that we have needed, our son is doing great and making huge improvements.

How can you get Private Duty Nursing into your home?

My advice to anyone that is struggling is to keep talking; keep your struggles fresh in peoples’ minds. Your pain, guilt, heartache, and struggles are real, although I am sure that you would not change anything because you love your child. Keep talking because someone WILL hear you, even if it takes two years.

In order to give you exact details about what you need to qualify and where to start, I turned to our case managers that helped us and did all of the “behind the scenes” work. This is what they had to say:

Normally there is a referral made by a hospital, clinic, pulmonologist (lung doctor), or a therapist. Sometimes families will call directly to see if they qualify. In Wisconsin, most referrals come from the 3 major children’s hospitals in Marshfield, UW Madison, and Milwaukee.

In addition to the above-mentioned list, people also have to be on Medicaid (disabled; not Medicare that you get when you retire). If you have private insurance, your company may not be willing to pay for skilled nursing care for a long period of time.

Anyone may qualify for nursing care (even adults) if you have had a transplant, been in an accident, got badly burned, need IV medication through a central line, have MS, have a seizure disorder that is uncontrolled or have had some other traumatic injury. If you have had, or know of someone else that has, any of these issues, talk to a doctor before you get discharged or at your next visit.

How fast you can get help (unless it is an emergency situation) in your home depends on a few things:

• How fast all of the paperwork is rounded up and submitted to Medicaid
• The availability of nurses in your area
• The hours you need covered
• Your family dynamics

Once all of the paperwork is in, Wisconsin Medicaid has 20 days to decide if your case is approved or if they need more information. If they need more information, then you have 30 days to round up what they need. You resubmit it and they have 20 more days to approve it. Most of the time YOU are not actually doing this paperwork; the social worker, doctor, or hospital is doing it for you. A typical case takes about 4-6 weeks. An emergency situation can take as fast as 2 days and then you have a period of time to get paperwork in order.

Private Duty Nurses are not in every state and may not be available were you reside. Please go to http://www.wisconsinphp.org to learn more about services in Wisconsin. If you are not in Wisconsin, please go to the web site and contact someone on the board of directors. They may be able to help connect you with someone in your state/area.

https://www.parentingspecialneeds.org/article/private-duty-nursing/

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