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View Full Version : Home nursing was just stringing us along, so now what...


jennymclelland
01-04-2012, 10:55 PM
Greetings all. James is now almost 9 months old and still stuck in a subacute trach hospital 200 miles from where we live. We live outside of Fresno, and our local hospital couldn't handle a trach baby, so he had to be up here in the beginning.

We made the call to bring him home in October. The only home care agency that takes pediatric tracks in our area is Maxim. (On paper, Interim takes pediatric trachs, but after extensive talks with their area supervisor, they're not willing to take on James. They haven't done a pediatric trach in years and don't want to deal with one now).

Maxim has been stringing us along for three months now. Every week when I call, they have "several nurses in the pipeline" or "a nurse is lined up, they're just finishing up on the paperwork." I didn't push them too hard because I know that very little gets done during December, because everybody is busy with Christmas stress.

I called today and got the big boss instead of our case guy / recruiter. She explained the following:

There are in fact NO nurses in the pipeline for our case. Not only that, they are not taking on any new intakes because they have only one clinical supervisor on staff (they normally have four). They have no coherent plan for fixing their lack of clinical supervisors, and they do not plan on doing any new intakes for several months. So, they basically just told me that they're too incompetent to be a home nursing agency.

I kind of figured (based on how lame Maxim has been for the past three months) that we would end up without nursing after a few months anyways.

My question is this: how do we force the hospital to discharge him without home nursing lined up? They have been adamant that they won't discharge without it, but home nursing just plain isn't going to happen. There is no facility within 200 miles of home that can take a trach baby. If James had been born in another hospital, he would have been cut loose months ago, with or without home nursing.

We can do this without nursing, right? James is straight trach, no vent. G-tube fed, puking issues resolved, oral aversion issues due to hospital OT being lazy and useless. We have a two year old girl. I'm a SAHM mom, husband is a teacher. We can't move because we can't walk away from tenure and Blue Cross health insurance.

suzanne2545
01-05-2012, 05:39 AM
Well. You are in a pickle, that's for sure.

I presume your hospital has case managers who are aware of the situation?

If it were me, I would sit down and have a heart to heart. They have rules, but in my experience, sometimes rules about things are catering to the lowest common denominator, therefore, they can be bent if you prove yourself capable.

Ask them point blank what the roadblocks to discharge without nursing are? Can you prove care? For example, can they put you in a room with him overnight (or two nights) without nursing care to show that you can manage him? What about a local hotel, if they won't do it in the hospital?

What are THEY doing to help you find nursing. If they have a rule, they need to help make it happen?

Do you have family who can be trained (by the hospital - to ease THEIR minds) to help you with backup as needed?

Last case, I would try to find out the ramifications of leaving the hospital against medical advice. If all it means is a note in hour file then fine. Of course, if it means you get social services up in your case, then maybe not. Just throwing it out there. But, if you look into it, check EVERYTHING - like insurance, hospital, etc. ramifications.

Good luck!

Baby1107
01-05-2012, 06:39 AM
UGH!!

For what it is worth, we left the hospital with no nursing care. This was in TX and our private ins did not cover private duty nursing. Waiver list was 5-7 years long so they really had no choice but to discharge. However, both my mom and I were trained (and had previous trach exp.) so my son was discharged a lot sooner than most trached kids, within 2 weeks of his trach placement.

Once we moved to CA and CCS and Medi-Cal were on board nursing has not been an issue, but we live in Los Angeles.

I think Suzanne is right you need to have a real frank discussion with the hospital, patient advocate etc. If you have been fully trained and are ready to bring him home I think they should be willing to work with you. Can you hire someone privately or will they require a licensed agency to handle his care? i also agree with other possible family member to be trained as a back up.

Hope all goes well.

Caleb'sMom
01-05-2012, 07:33 AM
how frustrating! I"m sure you just want your little one home!

I'm basically repeating what the others said. Get another family member or close friend trained in trach care so that there is someone to back you up during the day if need be. That will be encouraging hopefully to let the doctors discharge him. But it really is so important you have another person who knows how to do it just incase something happene with you or your other little one and you were in a bind.

Sit down with the staff. Request a meeting with the team of physicians and discuss it. Pull the card that his development at home will be better than in the hospital. Pull the money card- a kid ready to be home is sucking money out of the system (of course that's ok but I'm jsut saying maybe it will convince some). Set up a good arguement and present it to them.

You have every right to bring your son home without home nursing. It won't be easy but you already know that. The difficulties of it will be outsined much of the time by not having him 200 miles away.

Big Al
01-05-2012, 08:03 AM
Oh maxim... Sorry to hear you got bamboozled. No real advice accept to do what everyone else is recommending.

JWorthington
01-05-2012, 08:42 AM
We got transferred back to our local hospital on the proviso that one of us stayed with him all the time, we didnt have any care set up when he was initially discharged though we did get carers for 4 hours a week. we coped with all the nights alone, it was hard, but we managed. Surely they realise how much it costs to keep a child in hospital? it's ridiculous. best of luck, let us know how things go x

Sweet Harrison's mommy
01-05-2012, 09:12 AM
man oh man, that is SO frustrating!! So sorry!

Everyone here has given really great advice. I too would ask for a sit down with his care team there at the hospital, explain your situation, and express the importance of him coming home.

You can absolutely do this yourselves, especially without a vent. It will be hard and tough and frustrating, but you can do it if you feel confident enough that you have received the proper training to care for him.

Here's a thought....can you spend a few days in the hospital and request to do all of his care yourselves to prove that you do not need assistance? I know that the last 2 times that we have been in the hospital for a routine procedure, the PICU staff has not done a thing...on our request. We didn't need them and were only there for an overnight stay on a routine procedure. The last time, we would meet his nurses during shift change and then not see them again unless we called or paged.

Maybe you could try something like that to prove to the hospital team that you are ready and able to take him home!

jennymclelland
01-05-2012, 10:39 AM
The social worker / discharge planner set up a sit down meeting with the doctor today, so we'll see how that goes.

I'll sign away any of our rights to sue for negligent discharge, if thats what they're worried about. I'm not suing anybody. I might punch my Maxim recruiter in the face, but that would really solve anything.

We've done our overnight. His care is sooooooo not difficult, compared to the other trach babies in the hospital andy compared to the kids on this board. The hospital is full of much sicker babies, and a lot of CPS wards that never leave, so they're not really prepared to deal with a kid like James (or a mom like me).

My big thing with taking home sans nursing is: hey, if the nurses all quit, or I fire them... we'll be without nursing. So why does it matter so much to discharge with nursing when I'll eventually end up without nursing anyways?

anniegreen23
01-05-2012, 12:33 PM
nursing was our roadblock to being discharged, too. and we were also trying to work with maxim. they are the worst!

bottom line is you CAN do it without nursing. they'll try to make you think it's somehow illegal to be home with a trach kid without having nursing. it's not. when we did finally get discharged, the nurses maxim provided us with were so terrible and incompetent i didn't want them doing anything anyway. i fired all of them but one and kept her two nights/week just to keep the doctors off my back. at this point she is more of a nuisance than anything. i'm considering letting her go too, but a) we like her and i don't want to put her out of a job and b) if we ever end up back in the hospital, i don't want it to be a whole big thing again that we "need" nursing.

you have a very strong case here though. keep fighting to get home. you can definitely do it yourself! good luck! what hospital are you at, btw?

Cillian's Mom
01-05-2012, 12:40 PM
my heart goes out to you. we had nursing when Cillian first go his trach and was home for 3 months, then he got very sick and all but one of our nurses left because he was in the hospital for so long, he had to stay in a children's nursing home for 2 months while we waited for nurses (he was totally vent dependant at the time). They would have allowed us to take him home if we thought it was safe and we didn't experience any roadblocks if we wanted him discharged without nursing care. During that time, however, i didn't have any more time off of work and my husband is a SAHD, however, our other two children were just toddlers then and my husband was feeling overwhelmed so we waited. The nursing home was an hour and a half away so i can only imagine how you all are feeling. I think you can do the care by yourself if you feel comfortable. By the way, your children are adorable!!!! Best of luck to you. At the end of the day, this is your child, threaten to get a lawyer involved, things will change pretty fast.

jamie
01-05-2012, 01:56 PM
CALL THE MEDIA.... I take it he is not on a vent. My son lived 7 months in UC Davis because CCS would not discharge him, he is however on a vent. But let me tell you there is something really wrong with the state of California. My son is practically a typical child, he was made to live seperated from his family in a Special Care unit for absolutely NO good reason. If you feel confident to care for your child, you should be able to do so at home. Granted it could be really difficult without nursing, and I can't compare our life to anyone elses and yes there are times when i wish we had a nurse. but over all having my child live at home is worth every sleepless night.

Melissa
01-05-2012, 01:58 PM
Jenny, we may be a different story, but we left the hospital, without even going to a facility for aftercare, without any nursing. I didn't want that but I also didn't want to be far from my daughter (even though she was already an adult) and limited to a few hours of visitation each day. That would not have been good for any of us following years of her being in our home cared for and living with her family. Her trach should not have mandated she live apart from the rest of us.

So we came home with four visits from the hospital's home health nursing, we got three, and then we also were interviewed by Maxim and Interim as well as two other agencies (on paper alone, no home visit). One didn't want our case and the other had no nurses willing or able to staff. We've never had nursing. We're going on three years with the trach now. Still no nursing.

You're right in that even if you are first staffed, any event can occur which leaves you in the lurch and on your own. California is strapped for home health nursing, or at least new home health coverage. I would suggest you working with the discharge team to get the bare minimum, not signing away any rights or any AMA paperwork, and then bringing your little guy home and continuing to work on the most appropriate method of continued care for him and what's best for your family.

You may find you only wish to have a worker provide respite hours or only sporadic care. You may find you want two days a week every week. Once you know what your routine may be it'll be easier to decide what route to seek.

I wish you the best. Sorry for writing a book here. =)

Christamae
01-05-2012, 02:32 PM
we had this problem, too. we had to prove that we could handle my care. we transferred to the floor (from PICU) and my dad & grandma had to do all suctioning, ventilator stuff, trach care/changes, etc. for 2 weeks.

you might propose a similar arrangement as 'proof' that you can handle the situation. I think we had to sign a waiver too to release the hospital from all responsibility

gabrielsmom
01-05-2012, 03:32 PM
Maxim is THE WORST!!! Ugh :((( Have you considered private nursing? Im in Ohio and we can either choose a nursing company like maxim or private duty nursing. The nurses are independant. The company I use is called CareStar. All of our nurses have been independant and they have been wonderful!

Sweet Harrison's mommy
01-05-2012, 04:25 PM
Man, I'm just remembering that Maxim kind of screwed us over as well! We started working on nursing a few weeks before we thought that Harrison would be coming home, we started with Maxim, they strung us along for a good 10 days before they abruptly told us that they can't take vent patients! I forgot all about that until reading all of this stuff on here. They should really be held accountable for messing with so many families.

Momoffive
01-05-2012, 04:58 PM
Our nursing situation in Canada is different but I would just add that if you can persuade them that you are good to go even without nursing, have some family (or close friends) that can be trained to help out and have some help so that you can be primary with your son but someone who would help with your daughter or even with things around the house, then I think you are going to be just fine. Your children are adorable!

klhanway
01-05-2012, 06:00 PM
That's ridiculous. We went home two weeks after my daughter got her trach. No nursing, no family around, so DH and I are the only ones that know how to take care of her.

kctwinmommy
01-05-2012, 06:56 PM
I'm sorry that they're doing this to you guys! It's so stupid that they'd rather waste so much money on hospital bills then just believe in you guys. Like someone else said, maybe if they have some home visits to see how things are going, just in case.

And I agree that Maxim is one of the worst! They're obviously a low-budget agency. We had one of their nurses for K's school nurse last year, she turned out to be awful, incompetent, and plain old lazy! They were even fined in the past year or so for things they've done wrong.

Oh, and the other thing you pointed out, I also agree that what happens if they were to line up nursing, then they all quit and you had nobody!?? We're basically dealing with that!! We've been home for 2 years and went though ups and downs. Finally, in the past 6 months, we'd had great coverage. Then at the beginning of November, we lost our school nurse (a different agency contracts with the school district for that), then after K came home from the hospital, about a week before Christmas, we lost 2 of our 3 night nurses! So now, we're still without a school nurse, meaning I go with her everyday. And we have only Sat. & Sun. nights covered! It's awful!!! And my husband works midnights!!

I hope the case managers at the hospital finally agree to work out some sort of compromise for you guys!

jennymclelland
01-05-2012, 11:38 PM
We raised holy hell at the hospital. We let them know the total lack of nursing. They agreed to discharge with no nursing if my parents (both retired) come in and get officially signed off as being trained.

We do basically all his care when we're at the hospital, and we've already trained my parents in suctioning and routine GT care. They haven't done trach changes yet, but they're competent adults, so they can learn. From what I'm reading, a lot of families that discharged straight from NICUs got really fast training. It took us MONTHS to get signed off in the hospitals stupid binder of stuff, because the nurses never had time to do the paperwork side of things. Do I really need to be taught how to change a diaper? Don't get poo on his GT site. Rocket surgery there. Thats a whole page of their official training binder. Yargh.

Hospital agreed to discharge on 01/11... thats NEXT WEEK!!! The DME says they have everything all lined up. They even have the infinity pump instead of the Kangaroo Joey, which is awesome. I'm sure we'll have DME headaches, but I'll trade our current headaches for that. I could go for some variety in my headaches.

And even better news, if it turns out to be true:

I raised holy hell on the phone with Maxim's regional director. It seems to have worked, because they're forking over a weekday day shift and swing shift nurse on 01/16. I'll believe it when I see a warm body knocking on my door. If true, that would make things even better. We'd prefer night nursing, but day nursing would make things easier given the toddler wrangling.

Home is better than hospital. We're so excited to be finally getting on with our lives.

jennymclelland
01-05-2012, 11:43 PM
And the school nurse stuff is crazy... how is that a free and appropriate public education? I'm seeing plenty of families that have it harder than us. It's nice to put things in perspective.

Livi's_mama
01-06-2012, 12:42 AM
Congrats on the homecoming date! You can do it alone. Many of us have for yrs and you seem really confident!

Maxim just sucks so only believe maybe 10% of what they tell you.

kctwinmommy
01-06-2012, 12:59 AM
And the school nurse stuff is crazy... how is that a free and appropriate public education? I'm seeing plenty of families that have it harder than us. It's nice to put things in perspective.

Yep!! We had to send her with our home nurses for the first 2-3 months last year. Which was fine. Then, around late October, 2010, they hired one from Maxim. She turned out to be bad!! Kira would complain about things, but we know that she's difficult too. So we didn't listen to everything. Plus, K wasn't officially dx'd with Asperger's yet, but we started to suspect it.

She was late to our house every morning. So they'd be late getting to school, which really threw off her whole day. Finally, the last straw was when they were on their way to school, late, and they bumped a curb, so K's vent tipped over. She called me and said they were coming back so I could check the vent. I asked if K was OK and she said yes, but she wasn't sure about the vent settings!!! :eek: :eek: :confused: So they came back to the house, they were only 3-5 minutes away, and I checked everything. But we found another nurse pretty damn quickly!! She'd been with our DD every day for the past 2-3 months and she didn't know the vent settings!?!?!?!

We did have a great one, but she went back to working at a hospital at the beginning of November, really screwing us in the process, and messing with K a bit too. She just abruptly ended our relationship completely (we had been FB friends, talked quite a bit beyond K's health), so it :( :(

principe
01-06-2012, 04:13 AM
How frustrating! But glad to hear James is going home.

When Aldo was in the hospital and I was all ready to bring him home case management told me I couldn't bring him home because I needed a four way wall socket for his equipment. Which is something I wasn't told in the beginning by the hospital. I did all my training & passed it & I'm all ready to bring him home and then they tell me this! The way they found out I didn't have a four way socket is because when respiratory from DME came home to train me she saw I didn't have the wall socket. But how was I to know when I wasn't told. But if DME hadnt told em they would not have known.

Then a day later social work tells me that they are basically going to send Aldo to a home care facility and gave me no option. I was upset, & I didn't want him in a home care facility. I never agreed to it but they were trying to force me. For a whole week I was looking for an electrician. I found one & he wanted to do a big job & charged me $4000. I told social work and they gave me the number to the electricians DSCC uses for families in need. They also gave me an application to see if DScc would do it for free but approval was going to take 2 months & Aldo was probably not going to qualify cause he's not on oxygen. Thank goodness this electrical company DSCC uses was great. The owner was knowledgeable about these medical needs and a very humane understanding guy. I talked to him on a Thursday, he came home on a Friday to check out the house and Saturday he did the job or $700. He was doing a big job for a company at the time, fixing some elevators, & couldn't promised me he would ome that Saturday ut turned out his elevator job passed the test & e was able to come right away.

Then I have the electrical issue solve & case management tells me they couldn't release Aldo till I lined up nursing. I had nursing lined up before as they were going to release Aldo before DME told them about the wall socket. But I lost those nurses due to waiting on the electrical issue. First, they wanted him out the hospital & were planning on sending him to a home care facility, I get electricity set up, now they don't wanna released him cause I lost the nurses due to their own fault for not telling me about the wall socket. I could have taken care of it as oon as Aldo got the trach if they would have told me.

Ok so then the nursing agency finds me nursing, the hospital releases Aldo and comes home. A day later I cancelled all nurses. I never used nursing. I could go on about the hospital but it be too long. The PICU at the hospital was great. 99% of the nurses were wonderful. But the trach floor is another story. 50% of the nurses were great, the other 50% were just lazy. Because of those nurses my training got backed up and that was the very first thing that made Aldo stay longer in the hospital which is something I didn't mentioned here. Too long of a story. I had forgotten all these. How terrible that we are going trough such a hard thing with our kids and then the hospital gives us crap!

mpgolden
01-06-2012, 08:25 AM
We have never had nursing and my son has a trach and is on a vent while sleeping. Thank goodness home nursing was not a condition of his hospital release or we would still be there 2 years later. We did have extensive training for 6 weeks and then did a "room in" for 3 nights and 4 days where we provided all of the care to make sure we were ready. I would suggest you meet with your doctors, social worker and insurance case manager. I am sure the insurance company wants discharge as much as you do so maybe they would have some suggestions also.

Melinda Golden
Mom to Noah; CCHS; trached and vented while sleeping
Mom to Beth and Hannah

jennymclelland
01-08-2012, 10:20 AM
I totally punked the hospital too. They said they'd release with no nursing on the condition that my parents get trained. The official training took FOREVER because they just couldn't manage to sign off a page in the binder.

We told them they had one week to get the grandparents trained, and that they needed to bring in a dedicated staff member to do it, so that nobody wasted the grandparents time. If they didn't get the training done, we were taking him AMA. They're calling in a staff member today and tomorrow, and staff is happy because they get some time-and-a-half for a really easy work day.