How much nursing coverage did you have at first?

[karen jw]

We're currently trying to prepare to bring my son home with a trach and ventilator. The docs are split. Some say that they don't see why we couldn't with the propper trainig and support ;then there are those that are pushing us to go to a transitional care facility.
The party line now is that they might not be able to find adequate nursing coverage...the doc told us that we would have to find nursing coverage on out own and that the case manager wouldn't help..then the case manager told me that she woud help. then she gave us a sheet that outlined the steps that she was goign to take in helping us, and it stated that parents are responsible for finding thier own nursing coverage....

please help in any way..how much coverage did you have...who helped you set it up? What are some resources you used.???
thanks, karen

[Karen S.]

Hi Karen.

My daughter Hannah spent the first 3 months of her life in the hospital and came home with a trach and vent (24/7). The children's hospital here in St. Louis recommended a nursing agency for us to use. I can't remember her official title, but there was also an individual at the hospital that took charge of everything for me. After I selected the nursing agency, she confirmed eligibility with my insurance company and scheduled a care conference before Hannah's discharge with the nursing agency director, Hannah's doctors, therapist, and my husband and I. The nursing agency director was given 2 weeks to schedule shifts for Hannah. We started with 24 hour coverage for 2 weeks, then went to 16 hrs/day.

I recommend asking the charge nurse of the unit if there is someone at the hospital that can help you (social worker, etc.) or if they know of a nursing agency that specializes in pediatrics. Your son is not the only one that has probably gone home with a trach and vent and I am sure some of the nurses in the unit can help you out. I found out the key word to finding a good agency is "Pediatrics". We were fortnuate to find an agency that only deals with children and only hires nurses that have at least 5 years of pediatric experience.

My other recommendation is your insurance company. I have recently been able to go to my case manager and have her do a search for local health care supply companies that were in my network. She was able to provide me with a list and I had to determine which one I wanted. It saved me alot of time calling companies, then double checking to make sure they were in network. I don't know what insurance company you have, but the letter I received from my case manager when she took over, was that her job was to make my life easier in regards to making decisions for my daughter, and she definitely has. I would call your case manager again, and if you get no where through her, go to her supervisor. She has the capabilities and resources to recommend an agency in your area and determine benefits available. It does no good to interview an agency that is not in your insurance network.

All will work out, but I won't lie, it does come with some headaches. I wish your son and your family the best of luck.

Karen

[christyw]

Dear Karen jw -

I do hope that you are able to bring your son home soon - it was a wonderful thing to finally bring our daughter home (after a year in the hosp.).

We were completely NOT responsible for finding nursing coverage. We had a discharge planner at the Arkansas Children's Hospital that worked out all of that for us. I suppose if our area had been a really dead area for nursing we might have had to step in and try to find more resources, but fortunately we didn't have to. We were never told to do anything on those lines. We had a nursing agency that supplied in-home care and covered our area. It would've been possible for me to go out and find a nurse that lived near us and wanted a private duty job - then have her hired by that nursing agency to work for us. The agency paid their nurses very well, and with us the job of taking care of Gaithy was very flexible in schedule. I let our nurse do extra hours on a few days if she wanted to have a 3-4 day weekend - she loved her job and therefore she performed it well and lovingly.

We received 24/7 coverage at the very first. However, it wasn't always really covered. BUT what was covered was plenty. We always had at least 24 hours 5-6 days a week for the first two or three months. Then I started getting rid of the hours myself, wanting privacy. Gaithy is almost three now and we recently stopped all nursing, but would still be approved 10 hours 5 days a week if we hadn't. She's been home almost two years, with trach and vent.

You need some help, time to SLEEP, and you may need coverage for work as well. It's hard, depending on how involved your son's care is. Gaithy did well, slept all night on her vent, with pulse ox on. I had stopped the night nursing and kept the days (which is opposite of what most parents do), and this is the way I preferred it. I had Gaithy's crib near my bedside, in our room, with pulse ox on the nightstand. I sometimes had to get up and suction, or maybe do a breathing treatment if she got choked up, but a lot of times I got decent sleep - probably as much as the parent of a regular kid her age. It was hard, but I wanted my home to myself at night. After about nine months of being home I went down to having ONE nurse, she was an LPN that was working for us already and we loved her. She went to working 8 hours, 5 days a week (M-F) and it worked well. She liked her hours, and it only took ONE person to fill my nursing needs.

I have heard other mom's say to advertise, pay nursing students, and more. This is only my OPINION, but it doesn't necessarily take a nurse to do this care. I would trust some of my closest family members and a couple of friends of mine above anyone. They know Gaithy's care. My husband and I aren't nurses and we are the experts with Gaithy!! So, non-nursing people can be an option later on. (but the hosp may insist on nursing coverage initially for discharge).

I hope all works out for you soon!

christy

[Jacks Mum]

You Guys in America are so lucky to have home nursing!!!
Here in Australia we dont get no home nursing whether we are public or have insurance.

There is a major diffrence in our Health Sytems.
Everyone is covered by the public insurance, it is the same as your medicaid-but anyone gets this without being income tested. Everything is free unless you go to a private doctor or private hospital.
We do have to pay a levy each year depending on how much you earn this is usually around a feew hundred dollars.

I wished we had home nursing here, as if my son is too hard to care for he will be cared for at the hospital.
Trachy-ventilated children live in hospitals. only a few with fantastic parents who can look after them live at home whether it be partime or permant.

I wish you are the luck with finding nursing for precious child.

When my son has his trachy it will take months for us to be accreditated to take him home.
He will most probaly be on Cpap of a night and he needs contstant suction as he cannot swallow.

Good luck again!

[Shari]

We use an agency, too. Finding nursing is tough, no matter where you are. But, it can be done. What state are you in?

We were allowed 24/7 at first, but we never really had that much. We were then cut to 20 x 7, 18 x7, and so on. Were down to 16 x 7 now. (We live close to Christy, so things are similar). Anyway, that is how much we were allowed. I actually used 12 hours every night (still do) and 8 hours x 5 days per week. I cut the days out last year, and now have days only occationally. I like having help at night and taking care of Jacob during the day.

This is definately doable. Get your baby home, if you can. They just do better at home!
-Shari