No where to turn? What now?

billy02 · #1 12-29-2008, 02:33 PM

My son is Billy and he has trach and g-tube 24/7, we also as of now have 16 hours of nursing coverage 7 days a week. But, as of January 4, 2009 my dh will no longer have a a job. He's a LPN at Abington hospital he's been there since he graduated from nursing school class of 96-97. The hospital decided they don't need LPN's anymore they rather RN's and some CNA's. Half of them aren't dependable and don't have time to take care of there patients as well as LPN's. They are turning ourlives upside down? There is a chance we will lose our nursing coverage and Billy might even have to go in a home! I can't see Billy in a home he will just fade away and die, we are there for him 24/7. Both him and I look forward to that cuddle time with Billy after our littleone is in bed. He can't do without and we can't either! What are we going to do without him, we have our up's and down's but we cant see our lives without him we just be empty inside. He has made such a change in our lives I know he helped me to become strong and more confident then I was. What do we do now? I wish we new what was going to happen hopefully by next week we will know where we stand. Where do we turn?

lil' G's mom · #2 12-29-2008, 04:17 PM

I don't know if your state has this, but have you checked into "In home support services"...... you get paid by the state to be your childs provider..... I get paid to stay home and take care of all his medical needs.... not "normal baby care" but everything to do with his medical...... It may not fit your complete needs but it may give you another option other then having to put your son in a care facility.....
Good luck

Ann · #3 12-29-2008, 06:25 PM

You should be able to get nursing care through the Ventilator Assisted Children's Home Program. It's funded by the PA Department of Health.

Here is the link to their website: Ventilator Assisted Children's Home Program

Debbie Boroughs in the Administrative Director and her phone number is (215) 977-8830, ext. 2402. I know Debbie personally and she should be able to help you get in the system and get what you need, but I would call asap to get the ball rolling.

Good luck.

Lifeisgood · #4 12-29-2008, 08:13 PM

Maybe your husband has already done this - but has he looked into getting a job at a nursing home, assisted living or rehab place? Are there any of those around where you live? I know that Harlie's day nurse (also an LPN) works at a local nursing home on her days off from here. They are constantly asking her to work because they are always short staffed. Even though that might not be what he wants to do, it would keep insurance and pay going for a while.

Good luck.
~Christy

kshell · #5 12-29-2008, 09:01 PM

Hi there, I know that I have replied to you before so I don't want to drive you crazy with the same responses. So here is my best info.

1. You should have a case manager through the PA Home Vent Program. They should offer you both respite care and advocacy. If not their PA Philly phone number is 215-977-8830

2. Keystone Mercy should be the medical assistance available to you in your area of PA. There are other managed care medicaids out there but Keystone is by far (believe it or not) the most reasonable. If your husband does not have a job they in all honesty will probably cut your hours but will still offer some assistance and should. You will have to go through hassle and appeals I'm sure.

3. Unfortunately, it seems that PA is cutting back on using LPN's across the board in many hospitals. Both my husband and I work in health care in PA (in and around your area) and it seems like the trend. Although not ideal, nursing facilities in your area are hiring, as well as staffing agencies. I know that it is not everyone's cup of tea, but it seems like what Keystone Mercy will want to see is employment from at least one parent. I know that this is what we go through with our medicaid insurance in PA.

I also hope that your home care agency has been of assistance to you through this process. A clinical manager or case manager should let you know what you will need to do to get coverage.

I hope that this works out for you, I know from what we have gone through it all seems to be about work verification and showing them a schedule of what is worked. It has been frustrating for us and upsetting because it feels as though the insurance is nitpicking, but I guess it is what we will have to do.

I hope this works out for you. My advice may not have been helpful, but I just wanted to give you the info that I have. Good luck.

Karen

Evy · #6 12-30-2008, 07:31 AM

Sorry for your situation. Karen gave good, sound, common sense advice. I hope you are able to follow it and as Ann said, ASAP. The wheels turn slowly. Best wishes,

Evy

billy02 · #7 12-30-2008, 03:59 PM

Karen, thank you so much for your info. We do have Keystone Mercy right now for 2 months I think they said they where going to continue our 16 hours 7 days a week coverage. After that we found out that my dh work was going to give us health coverage till April. So as of now it looks like they will continue our nursing coverage we have now with my dh's work. So we temporarily don't have to worry about Nursing coverage from Keystone mercy. As long as our primary insurence doesn't give us a hard time we should be okay. Thank you so much for your info. and advice. Sharon

JWorthington · #8 12-31-2008, 01:39 AM

Sounds like you have got excellent advice from everyone Sharon. I have nothing to add as things work very differently on my side of the pond. Just wanted to send you a few hugs

. Hope your dh can find something soon.

Julie x

Ainsley's Mom · #9 12-31-2008, 02:12 AM

I'm in another state so I'm not sure if I'm understand all of who is paying for what. But if your private insurance is paying for the nursing you should be able to pay to continue getting medical insurance through Cobra through his ex-employer. This could buy you enough time for him to find another job. Of course whether or not a new employer's insurance would pay for nursing is the question.

As a thought for job possibilities. What about being a home health care nurse. Like the nurse that comes to your home? Our nurse is an LPN as were all the other nurses we had before her.

I hope things work out for your family. I hate to think of Billy having to go into a home for all your sake. I really hope it never comes to that.

billy02 · #10 01-04-2009, 08:08 AM

Well today is the day today is my dh last day of work, he's an emotional wreck and so am I! For now we have the nursing coverage we need, but there is more to come. We have to be able to keep up with our mortgage and utilitie bill's etc. etc. I am so worried and scared! Our lives our going to have a complete change. I will probably have to go back to work pt not to happy about that when I've been home 3 or 4 yrs already. Also, Ben my little guy is use to Mommy always being there 24/7. Its going to be as hard for him as it will for me. We are either going to keep him at home with Dad temporily til he goes back to work, or Grandma's or nursery school/pre-k. Haven't figured that out yet. I just hope and pray that things will work out for us with just little changes not major changes. Please keep us in your prayers and send us some luck. Thank you all for being so supportive, I'll keep you updated. Hope everyone has a happy and healthy New Year!