[volsfan]

I am no longer on this case, but was wondering what your thoughts are and if anyone else has run across this same situation.

A parent of a pediatric patient in the HH system has prolonged getting their child decannulated b/c they say they don't know what they are going to do when the nursing care stops. They prolonged it for over a year and I just found out tonight it is going to be another year b/c they don't want their child to enter a brand new school next year w/o a nurse to help with the transition. The transition has nothing to do with medical issues.

I just keep thinking of all the resources that are being used on this case while there are other cases that really need the resources.

[AirforceRN]

Parents abusing system...how about parents abusing their kid? What little guy (or gal) wouldn't want to be decannulated if the option was there?

[SDALPN]

I've seen a very similar situation. Unfortunately, the ENT dr. wants to make his "insert fancy car name here" payments and the mother wants to delay for free child care. Very bad situation for the child. Try suggesting to the primary dr. that it might be helpful to get a second opinon from another ENT dr. if the primary is aware of the situation. Is it possible to get social services involved? I know those parents can be manipulative, making it more of a challenge. Good luck with the situation. I hope things work out for the child's best interest.

[DutchgirlRN]

I worked such a case for several years. The parents were not even American and they knew how to work the system. I never said anything because I loved the child and didn't want her to suffer any of the consequences such as going to a school or daycare who wouldn't take good care of her. I felt about her like my own child. I did way more than was required and bought her decent clothes and toys that her parents would not. The mother and I got along very well. This is how it ended. I insisted on having weekends and holidays off because they were home and they were able to care for her. They had had like 25 nurses in one year prior to my working there, no one had been able to stay because of the parents so the agency never looked for anyone to cover the weekends and holidays. Suddenly there was a new nurse who lived on their street, who was single, who lived with her parents, who said I'll work anytime. I get a call from the DON. She says Mr_______ wants to have this new nurse work for them because she agrees to work weekends and holidays, if it doesn't work out with her then he'll let us know and you can come back. I told her to call him back and tell him where he could stick it, she agreed, she said she had already told him I don't think she's going to like this one bit. I still missed that precious girl. I have talked to her Mom several times by phone. They have since moved. I understand the state has helped pay for their new home as it has a special area for her with a handicapped bathroom. Yes, they definately know how to work and abuse the system. That's sad.

[bookworm1]

Unfortunately, I have seen this with kids already in the system (DCFS) as well as kids returned home to bio parents. This is abuse to the child, but to call in the abuse report, you would have to be sure that the doctor agrees that the child is physically ready to transition and that rarely happens if the parents want home care to continue. I had one such child in my home while her case was being investigated. She was shaken baby and had a g-tube (along with many other things). She was being taught to swallow and had passed the swallow tests with the PT and ST but the other foster parents refused to follow up at home. She was able to drink from a cup and really wanted to do so, but if she was allowed to the bio and foster parents (they were related) would lose the big bucks for support in addition to the full time nursing help. Sad situation for the little girl, she was such a doll. Doc agreed with parents and disagreed with the reports from the therapists and nurses so the judge awarded custody back to the foster and bio parents. Greed is such a nasty thing.

[KellieNurse06]

Originally Posted by DutchgirlRN

The parents were not even American and they knew how to work the system. I understand the state has helped pay for their new home as it has a special area for her with a handicapped bathroom. Yes, they definately know how to work and abuse the system. That's sad.

Oh this really gets my goat!!! I was born here, my daughter was born here......and as alot of people on here who have seen my posts before know I have a severley handicapped child. I have NEVER EVER asked for one thing for my child ever.....let alone getting the state to help pay for a home for us......... and believe me...I put my name on a waiting list for handicapped apartments when my daughter was 3 and began using a wheelchair.......and she is almost 18 now...and I am still on that waiting list. Oh this gets my butt royally!! Gosh when I have to get medical things for my child because she needs it, it's like pulling teeth for pete's sake! And here these people get help with not only a home but a special bathroom on top of it all!!! I have to lift my 113 pound kid to put her in a tub on a bath chair....and walk in the door sideways to get in ........ What is wrong with this picture???? Sorry , I don't mean to go on a tangent but for crying out loud!!!
Yes I think these parents are using their kid to work the system...especially if they don't want to decannulate their child & with no good reason not to... My kid has a permanent trach.....had to have her upper airway sutured closed and have her trachea & esophagus seperated to prevent any more aspiration & to keep her airway from collapsing..............gosh..I'd give anything in this world to have the chance to decanulate my daughter...but obviously that will never happen...... These parents are a pair of winners......I'll just stop there now......

[KellieNurse06]

Originally Posted by SDALPN

I know those parents can be manipulative, making it more of a challenge. Good luck with the situation.

I really hope you weren't generalizing because I am "one of those parents" (the ones with a child who requires home nursing & the whole gammit) although I could very well manipulate the system if I truly wanted to...I never have and always thought there were others out there who needed stuff more than we did so I would pass on alot of things/services that were offered.....plus I would feel very guilty taking,taking,&taking ...............but I know there are those who do just that sadly ......

[Cattitude]

Originally Posted by KellieNurse06

I put my name on a waiting list for handicapped apartments when my daughter was 3 and began using a wheelchair.......and she is almost 18 now...and I am still on that waiting list.

There is something majorly wrong in your state/county if you have been waiting that long for a handicapped apt!

Kellie, I have read many of your posts here, you sound like a great Mom and also seem to make your home care nurses jobs a lot easier. Thank you for all you do and Bless you. You deserve a LOT more than that apt.

[KellieNurse06]

Cas... thanks so much for the kind words! I am calmer now...lol! But I totally understand there are those who do work the system for anything & everything.....which is most likely a bit of the reason for the "long wait" on a waiting list for us......I live in a house with my guy that we bought 6 years ago......but yes we are still on that waiting list as far as I know of..crazy,huh? I obviously don't need it now , but it's the principle of it....
Anywho, you are very kind! I treat the nurses who come into my home as I would like to be treated myself.....plus I see how hard some of them work & really seem to care genuinely about my munchkin and that makes me have alot of respect for the ones who are really dedicated nurses.....
Thanks again! Have a good one!