Has anyone had a home health nurse to help care for any of your children? Our son's needs have become too great for us to handle without jeopordizing his health so we've been pushing to get a nurse. A nurse will be here as much as 8 hours a day. I want her to be able to do her job but I still want to be involved in his care. I'm just wondering anyone's experience (good and bad) with this.

Also, has anyone applied for CAP-C? I've been told it is very difficult to get nursing care approved through CAP-C. We've started the process but not sure how it will end up. Our insurance will pay for some but not as much as we need.

Thanks for your input.

Lynda
Mom to
Nathaniel (future kidney transplant recipient), Audrey and Samuel
born 9-19-03 at 31wks 5days
Patrick 4 years old

My daughter Emma had a nurse for 3 years. We fought from the start to get one, and insurance only authorized 8 hours a day (which I took for nightime coverage). She was not to be left without trained awake adult supervision, and I wanted to sleep! Part way throught the 3 years, we had to take our appeal to their denial all the way to our State Insurance Commission, who deemed they had no right to continue coverage. That involved an attorney and a favor from a good friend who is also a state level politician.

We had troubles with some of the nurses who were assigned to our case. A few examples of troubles: going to the kitchen and eating our food (they were only allowed to leave her bedside to go to the bathroom), smoking (not while on shift, but prior to arrival. The smell of their clothes was horrible and they were dealing with a child with airway issues!), not showing up on time, falling asleep, etc. I put a tv/vcr in the nursery for the nurses to watch, which I had mixed emotions over. My mother was director of a large visiting nurse organization for a long time, and I knew what to expect with a nurse in my home. She told me it isn't fair to expect anyone to stay awake overnight with no light and no tv, so we had a lamp next to their chair, and the tv/vcr for them. It turns out the constant noise of the nurse, monitors, oxygen concentrators, etc had hidden blessings! My kids will now sleep through tons of noise! Once they are asleep, we could dance a polka in their room and it wouldn't disturb them! Well, the nursing troubles were solved when the nurse we had for 5 nights a week (she was super) decided to take the overtime and work 7 nights a week. I usually wouldn't advocate someone never have any time off, but she was divorced and her kids grown, she didn't much else to look forward to but taking care of our little ones! She became a good family friend.

Our nurse was provided thorough private insurance, although childrens' special health would have picked up a nurse as well. We automatically qualified for CSH because my daughter has special health needs. It is worth fighting for a nurse when you feel you are entitled. I don't know what state you are in and what the laws are, but I will be glad to talk to you personally about any of my experiences. Please send me a private email if you are interested. Thanks and good luck.

~Melissa mom to Sarah, Ryan, & Emma. Post 26 weekers weighing 1lb 7 oz each. Visit our web sites at: http://www.tracheostomy.com/trachkids/kids17/emma.htm , http://www.gkmom.org

We had a nurse for Vivian, and had the opposite of Melissa's experience.We had 12 hours for every night, and an extra 20-30 per month+. We had Vivi's crib set up in the family room, so the nurses had access to microwave, downstairs bathroom, TV, DVD and VCR. The nurses were slobs, I would have to vacuum the area every morning. Sometimes there was even poop on the bathroom lightswitch where the diaper pail is! They would fall asleep when they were supposed to be awake with her, and some didn't even know what to do if she cried! I finally said we were done with it, and I sleep in the babies' room to be sure I wake for anything.
For the nurses, and I hope you get good ones, they can be alot of help,. but make sure that your rules about what they are allowed to do are spelled out very clearly. Be sure they know that you WANT to be involved in your son's care, so they know to help,but not go too far. I hope your son's health improves and everything goes okay with the transplant when it is time.
BTW, our insurance covered some of the nursing, then the staet picked it up since our DD is considered disabled, and having triplets makes the chance of getting an agency to deem you in need of assistance more likely, since you have more than just the one. Good luck.

Mom to:
Matt (1991) Megan (1994) and ^Eric Jr^ Levi and Vivian (2003) at 26 weeks

sarah has nursing coverage but not through her primary insurance. it's through gateway because she is special needs. our nursing experience has been on-going since jan 03. at first we had 24 hours a day then 16 then 12 and now 8. i have cancelled most nurses at this point i can take better care of her, not that they can't or won't i just want to. we will only have a night nurse one or two nights a week. i've probable seen 10 nurses in this house and i am so glad sarah is stable enough for me to manage. it's hard to have someone in your home. what's worse is when they become attached ..that is too attached. (one reason why i cancelled nurses)
best advice is make your rules clear from the start. don't mess around with how you want your son cared for. don't put up with anything you aren't comfortable with. they can be a huge help when they aren't being nosey pitas. i don't know what cap-c is but sarah's is through the state. you didn't mention how old or the health concerns your son has? the set up we had up until a couple of days ago was like erika's. sarah was in the living room and the nurses (night) had full run of the first floor. and not one every ate any of our food unless i offered. best of luck!! i'm sure you will get more responses!!
kate

charlie
katelyn and sarah (trached 12/02) born 9/02

Kate Miller mom to Charlie, Katelyn, and Sarah born 9/02.
28wks