cant sleep...my hearts breaking

My son blake's still in the nicu..and the great thing is he's doing great..and can be discharged in a few days..the terrible thing is they cant find any home nursing in my area...so therefore he cant come home...they have been working on it for weeks..but appartently there are not any night nurses available...the drs refuse to send him home with out any nursing..and the insurance company told me to put him in a rehabilitaion center..NO WAY..i learned ALL his trach care and gtube care..im purely capable of taking care of my son..yes..it would be nice to have some help at night..but i cant even imagine not being able to take my son home once and for all after 7 long weeks..cause there's NO NURSING...this is so ridiculous...i cant stop crying..he 100% healthy...he needed a trach bc of a blocked airway caused by his tongue..i hate insurance companies...and just am so angry and mad..i just dont know how to handle this anymore..i was doing better emotionaly two weeks ago when he was getting surgies and what not..i should be happy..hes all fixed up for now..but no..i cant because..i still cant have my baby..honestly..this is the worst thing ever..its one thing when a baby is still sick or growing in the nicu..but he's great and ready to come home...i just cant take this anymore..and NJ is a terrible place to have a child with a disability..terrible terrible terrible...you have to be dirt poor for anyone to help you..god forbid you actually work for a living then they could care less..sorry to ramble and vent and sound so bitter..but i just hurt so bad..i want my son home and i feel like its never going to happen : (

[evie23]

i am so sorrt to hear this i do know what you are going thru my first dd was born at 26 weeks and had many problems and they would not let her come home until i had at least four other people besides myself trained to care for her. I cried everyday she was not with me.

[ImmortalOne]

Oh hun, I'm sorry you are dealing with this BS right now.  I can't imagine how you feel, let alone tell you I understand beyond what a normal mother can.  I can just wish I could wrap my arms around you and hold you close to try to make it at least a little less worse.

[peekawho]

http://bayada.com/pediatric.shtml
Website says they take care of technology dependent pediatric cases at home.  Looks like they are about 9 miles from you.

http://www.vnaofstlukes.org/homepage.cfm?id=161&SubDomain=true
Says they provide at home pediatric care

http://local.yahoo.com/details;_ylt=AnKG7sfKJzVK7nLV.Jqs5YyHNcIF?id=26810826&lsrc=results&p=home+nursing&csz=Phillipsburg%2C+NJ+08865&fr=yfp-t-471&lcscb=

http://rxhomehealthcom.superpageshosting.com/ourservices/
Says they do pediatrics.

http://local.yahoo.com/details;_ylt=Ap0G0tpt8cvACFzC0uZDKwSHNcIF?id=12090242&lsrc=results&p=home+nursing&csz=Phillipsburg%2C+NJ+08865&fr=yfp-t-471&lcscb=

IF THEY AREN'T CONTRACTED WITH YOUR INSURANCE, YOUR INSURANCE COMPANY IS OBLIGATED TO PAY IF THERE ARE NO OTHER CONTRACTED NURSING SERVICES IN YOUR AREA.
At worst, you'd have to pay out of network fees, but there's a cap on your out of pocket, and you may already have reached that.

[maddysmommy]

Thank you..unfort all of those companies listed are nurses either more then 2 hours away or live in the next state over..only 9 miles but they dont have a license in NJ just pa..I have honestly exhausted every nursing agency within a hundred mile radius..no one wants to help out at night..its a shame..

[peekawho]

This simply can't happen!  They can't hold your child hostage from you if you have shown you can take over his care.  
At some point, you might have to consider consulting an attorney.  This is the United States, and that is your child.  If you can take care of him, how can they tell you he can't go home?  

I'm steaming mad for you.  This is America.  You have a right to have your child in the least restricitve environment.  Bet if you couldn't pay the bills anymore, they'd send him home.  

[orphanannie59]

Is there not any way they could let you show them that you can take care of him?  I know the nurses know that you can, but maybe show the doctor?  I am so sorry that you are having to go through this. Stay calm, it will work out, I just know it will. Is there a state agency for children with medical problems?  I know NJ is small, but in KY we have one. They may be able to offer some assistance even if you work, they are supposed to be there for children. Try looking up your state website and see if there is one.

Peek, you rock!!  I wish you worked where I live, I bet  you are an awesome L and D nurse!!

[daprincess21]

oh im so sorry hun! I hpe and pray that Blake will be home with you very soon. Put your trust in gods hands and it will pull thro some way some how!
I work for a staffing service and we do home nursing care 24 hours a day. I wonder if they have something like that where you live? It is usually used when there are no other options avalible at the time. Good Luck Sweetie, and keep your chin up!

[orphanannie59]

http://www.state.nj.us/humanservices/catill/whats1.htm

I know you said you have insurance, but if you call these people they may be able to tell you providers for in home nursing, or at least tell you what your rights are.  This state agency is there for reimbursement of the expenses, but still they  may be able to offer some help.  

[orphanannie59]

http://www.state.nj.us/humanservices/dds/RD_07.pdf

This is a site for information on services in your state.  I don't know if you will want to try this information, but at this point I don't think it will hurt to try.  Page 40 & 43 looks like it might be something to look at.  I know you said NJ will not help if you work, but even if you work you still may be eligible for services.  I hope I haven't offended you, but it enrages me that this is happening.  

[maddysmommy]

thank you...no u didnt offend me at all i appreciate the help and suggestions..ur taking time out of your life to research info.,.thats very kind of all of you..i did already contact every state agency and in nj its all about your income and if you make a penny over their guidelines then they wont help you at all..i dont work..but my dh does he makes a lot though..but i still figured with a one family income..but still nothing..and as far as the nursing agencies..i have called everyone they just wont do nights..and my rights..well basically i feel like i dont have them..i know the hospital is just doing whats right..their theory is its hard enough taking care of a "normal" newborn 24 hours its going to be even harder taking care of him..its different i cant sleep when he does bc what if the trach gets plugged and i dont hear him..figuring he makes no noise or cry..its more of a safety issue..which i sort of agree with..but to an extent..if in three weeks there's still no nursing..then i will fight to get him home...the dr's and nurses are well aware that we are capable of taking care of him..i guess they just are scared about night time..and sleeping..idk..he'll have a monitor..well i wont have anymore answers till monday...they are working on it at the hospital very hard for me..now the ins company thats anohther story in its self..that movie sicko..about insurances and stuff..its so true..thanks for all yoru help

[AndiJ78]

That's it, I am flying my mom out to NJ. She is a pediatric nurse that has been working home care for almost 20 years, and she is not opposed to nights ; )

Seriously, I wish I could send her out there. As much as her job provides for her financially (surprisingly not that well all things considered) she has always encouraged her kid's parents be hands on with care and most of them like to take the night shift or mids. Part of me understands the hospital, working 24/7 with a typical newborn can frazzle some (just look at the posts on here) and caring for an infant with a trach will be that much more difficult. But my heart breaks for you knowing you cannot get him home because of this.

I will see if I can get ahold of my mom, see if she has any ideas. She has been jumping through the hoops for medically fragile children for so long, she is bound to have some tricks up her sleeve. I will PM you anything I find. She generally works weekends, but I may luck out.

[AndiJ78]

Okay, I just spoke with her and she had a load of suggestions. First being see if they will accept a compromise, you take eve's and nights and bring in a day nurse so you can sleep then. If you cannot locate a night nurse, that seems a logical compromise. Second, she says (from years of experience) that oftentimes, allbeit a risky gamble, that they want to envoke parents assertiveness. It lends an air of condifence to your ability to care for your child. Stand up and say "This is how it is going to be" show at the same time you are willing to compromise, but stand firm in your ability to care for your child. Admit you realize you need licensed nursing staff there, but hammer home that you know you can take care of him the other 16 hours a day.

I have sent you a private message with my contact information. Please use it. I have some other information I want to share with you when you have time.

[peekawho]

Excellent!  Thats terrific advice.  

[Van73]

HI I have worked in the Medical/Insurance field almost 10yrs and Peek is correct.  If there are no in network providers within so many miles of your area, the insurance company can negotiate a IN NETWORK rate with the Out of Network facilities.  This is definitely medically necessary. Good luck and I am defnitely praying for you!

[babyprayers]

what about public health. or call your local dept. of social services, they may know of something for you. there are tons of people out there that need at home care. hope everything works out for you.

[Me2mommy2b]

I'm sorry that you're going through this, hon.  I do agree though.  Insurance companies are just terrible.  Hang in there, your little guy will be home soon.  Good luck.

[maddysmommy]

UPDATE
Blake was cleared medically to come home..but still no nursing..the discharge planner is working so hard to get us home..but the insurance is another story..here's the issue..the ins company found ONE nursing agency to take our case..but they will only do days and not every day..the doctors and myself feel that days are useless considering i have a three year old dd and i still need to be awake to care for her.  So the ins company says beings they found one compay but bc of SAFETY reasons we cant accept that companies offer..they wont go out of network..which is just stupid and wong..we pay over 300a month for this insurance..its a good policy with good benefits..on paper..but when push comes to shove..they wont do anything to help..they are so persistant on him going to some rehab group home..that's still an hour away..they meaning ins comp..and i down right refuse to stick him there..when i actually want to take care of hiim..i dont know if thats the **** they are used to.but i wont put up with this...thankfully the hospital, dr, and staff are excellent and very helpful..and are fighting for us..otherwise it would be even more complex...im at a loss of words anymore..i just cant believe i have to fight to get my son home from the hospital..its a sad day knowing right this min he could be in my arms at home...and hes not

[AndiJ78]

Oh, I thought she had care during the day outside the home, seems like you mentioned a childcare program once before.

At any rate, I sincerely hope you can find a solution. No mother should have to endure all of this.

[tmv]

I am so sorry. I hope how soon that you get this resolved. My heart goes out for you. I am so glad that he is doing well enough to go, though. You're both in my prayers.

[maddysmommy]

yes she does have school..but its from 9 am till 2pm and the nurse will be there from 7-3 so i really would only be able to rest from like 10-1 which isnt much rest considering id be up all night..i mean personally im fine with doing it all myself..but the drs will not agree to it..

[tmv]

That's definitely not enough sleep. Hope everything works out quickly.

[peekawho]

Makes you glad you live in the USA, doesn't it?

Your child is being held against your will unless you surrender him to a group home for an unknown period of time.  This is something you should call the TV stations and newspapers about.  You have a child, he is cleared to go home, you need nursing assistance and can't get it, so you can't have your son.  
He is being held prisoner, essentially.

Just wait til your insurance company tells you that since he is cleared medically to go home, they won't pay for another dime of his hospital care.  That's coming soon, I'd bet.  

[AndiJ78]

This may sound odd, but what about doing shifts with dh? Surely you didn't have him alone and you shoulnd't be expected to be the only one caring for him either. I realize your dh probably works outside the home, but who's to say you cannot sleep in the evening while he cares for Blake, you take the night shift, and take advantage of that 3 hour period during the day to catch a nap.

Get hime home, worry about the semantics later. You guys will find your groove, I am certain of it. Don't give them any more reason to keep him, tell them you will make it work. Again, trying to push that assertiveness they need to see from you. Everyone, the docs, the nurses, and the insurance company need to know you can and will do this. Oftentimes you will see one pitting the other against the other to deflect the attention from themselves. The insurance company cannot keep him there, that has to do with the doctors and/or hospital. But I am willing to bet Peek is right, soon enough something bigger may come along.

[maddysmommy]

o yes..i heard that yesterday..for everyday he is there and does not need to be its a hundred dollar co pay..but i was not too concerned the drs said they will put what they need to in his chart and not fully discharge him till nursings found..they are awesome here and have a wonderul bedside manner and truley care about their nicu babies and families..well todays another day so hopefully we make some progress..thanks

[kerryke]

Does it have to be an actual nursing service?  Would they pay for separate nurses if they are qualified?  Maybe there are some nurses that arent working and are looking for some kind of situation like yours?  I dont know whey they wouldnt pay for that as long as they meet the qualifications, if they would you could just start posting that you need nurses for homecare.

[peekawho]

I've seen ads in the paper from families looking desperately for home pediatric nurses.  I guess this is why.  

Probably for insurance to pay, they have to meet certain qualifications with a nursing service.  You would have to pay out of pocket if you just hired some off duty nurses, I think.

[maddysmommy]

Some good news finally..they finally found an agency to take our case!!! as of now they only have three nights staffed and four days..but its a start..and its good enough to get him home!! so mondays the day..it maybe earlier but no later then monday..thank god..i really appreicate all of your girls help and research..its awesome to know i can just post my feelings and frustrations..and there are tons of ppl i dont even know who are willing to help me out just like that...you all are so great..i hope one day i can help some of you out with some concerns or advice anything..god bless you all..and thanks again..ill cont to keep everyone updated..and again if you'd like to follow blakes story he has a care page at
www.carepages.com

and his page is under
blakesweigert    no spaces.
thanks again : )

[K1990]

YEY!  Blake gets to come home!!  That is so wonderful, I can't believe it.  When will he need his other surgeries?

[AndiJ78]

I actually called my mom today and the first thing she asked about was your Blake. Monday is wonderful, I will have to call her in the morning to let her know. I sent you my email addy (it is also on my profile) if you ever have any questions, please let me know. My mom's experience is invaluable and she is a wonderous source of information.

[Crritter]

I'm so happy for you!  I hope you are home snuggling your little ones soon.

[maddysmommy]

Thank you !!! the only other surgery he will need is to fix his soft palate..he has a tiny u shaped cleft..we lucked out there it being so small..it didnt cause any issues..just his smaller jaw did..that surgery wont be until about a year old..after his jaw has grown out some...other then that he's good to go..it would just be minor things..like decannulation him and removal of gtube...which will be a glorious day...deft in the future but i stay optimistic..thanks again

[tmv]

That's great. One day at a time so as not to become overwhelmed! :-)

[ImmortalOne]

I'm so glad to hear he's coming home!  Hold him close!