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jamie
01-24-2010, 12:07 AM
The thread on family leave has me wondering how many of you are working parents and who takes care of your child while you work?
before all of this, I worked two jobs and Evan has been watching himself since he was 8 years old. I regret this, but as a single mom I had no choice but to work 50 plus hours a week. Now that Evan is trached and going through all the stress and difficulties that the nerve damage has left him,I can't imagine working two jobs and barley can handle the one part time job, my mom is good about watching him while I work, but she has to take care of my elderly grandparents.
Just curious how you all do it?

mariap76
01-24-2010, 07:37 AM
Both my husband and I work full time. We have nurses who care for our daughter while we are at work. Have you looked into getting nursing for your son? He uses a vent doesn't he? In Virginia (where we live) if you have a trach and are vent dependant you get 16 hours a day of nursing through the medicaid med-tech waiver.

LKN
01-24-2010, 09:01 AM
We both work fulltime and we did not qualify for medicaid. We paid out of pocket for nurses to watch him while we were at work.

Do you have medicaid and nursing? I would think that given your complicated situation you'd qualify for both medicaid and nursing while you work--as you are his primary/only caregiver. Can you check with your social worker at the hospital? They can be helpful. Good luck!:) :hug:

JacobKaden
01-24-2010, 10:15 AM
DH cares for Jacob and works part time from home. I work full time. We use our nursing hours to cover nights. It sounds like from the other posts you should qualify for nursing hours through medicaid. Best of luck - caring for a medically fragile child is tough with two parents and I'm sure overwhelming as a single parent.:hug:

jamie
01-24-2010, 11:10 AM
Evan has medi-cal and california children's services, but when we left the hospital they said he did NOT quailfy for home nurses because he is on a vent. They ( his discharge planner and the social worker) said home nurses do not know how to care for vent patients. They told me I should ask people from church to help me out. I wonder how much more they would know about vents than a nurse? I wonder if this is a California problem because of our budget? I wonder if they expect me to leave him home alone? Like I said before he used to take care of himself even when he was as young as 8. I am afraid now even to leave him alone to go to the store let alone to work.
Sorry to ramble and rant, but I am pretty new to this, in fact we are at a milestone of being home from the hospital 20 days yay.

mariap76
01-24-2010, 11:34 AM
Sometimes people at hospitals don't know what they are talking about. Can you call the medi-cal office yourself and ask them? Not qualifying because you are on a vent is the weirdest thing I have ever heard.

Big Al
01-24-2010, 12:57 PM
Evan has medi-cal and california children's services, but when we left the hospital they said he did NOT quailfy for home nurses because he is on a vent. They ( his discharge planner and the social worker) said home nurses do not know how to care for vent patients. They told me I should ask people from church to help me out. I wonder how much more they would know about vents than a nurse? I wonder if this is a California problem because of our budget? I wonder if they expect me to leave him home alone? Like I said before he used to take care of himself even when he was as young as 8. I am afraid now even to leave him alone to go to the store let alone to work.
Sorry to ramble and rant, but I am pretty new to this, in fact we are at a milestone of being home from the hospital 20 days yay.

you should definatly qualify for nursing, you need a new social worker as this one is defective. You might run into some resistance because you have been home for so long without nursing, but if your persistant that you need it in order to work and make a living they you shouldn't have a problem. What about school? are they going to want the school nurse to somehow supervise his vent from the main office? and even if that works what about transport, are you going to have to drive him yourself, or leave him to the care of the bus driver if things go south? I guess this is assuming that he has no respiratory drive at all, He can bag himself if the vent malfunctions, right? But he should still have someone there to suction and replace the trach if needed. It sounds like what you realy need is a nurse on the night shift. I would start with his Pulm and let him know your concerns, they should be able to get the ball rolling on home nursing.

TaraB
01-24-2010, 01:19 PM
My husband and I both work full-time during the day. He has two days off during the week. The other three days we are fortunate enough to have our in-laws. We went through months of hell trying to get nursing; our home agency doesn't do shifts of care, and the next nearest company couldn't find staff to hire around here. We spent two months in the hospital just waiting for nursing, so we decided to go home without nursing.

Ann
01-24-2010, 01:50 PM
Evan has medi-cal and california children's services, but when we left the hospital they said he did NOT quailfy for home nurses because he is on a vent.

I'm sorry, but I find that very hard to believe. It's kids with vents who usually do qualify for nursing more than kids with trachs only. I would contact someone at Medi-Cal and California Children's services directly. It's possible they don't have any qualified nurses or money to pay for nurses to care for kids on vents, but to say that your son doesn't qualify for nursing because of the vent is absurd.

Both my husband and I work full time and we have nursing during the day when we are at work. Currently, our private insurance pays for nursing care. However, in the past when my husband worked for a different company and nursing wasn't a covered benefit, nursing was paid for by our state program - Arizona Long Term Health Care Services (ALTHCS).

kadiera
01-24-2010, 01:53 PM
We both work full time, for various reasons. One of them is my insurance - I used to complain about the costs of it, but Alexander has proven to us how amazing my insurance is, and it's worth every penny. My husband's company is tiny, and had we been on his insurance when Alexander was born, the entire company would be without coverage right now, and we'd be bankrupt, even with our medicaid waiver (either one of us working means that Alexander doesn't qualify for medicaid, except when he was inpatient at the NICU and our incomes didn't count).

Our medicaid waiver gets us 12 hours of nursing a day (apparently, 6 hrs per working parent is standard here). We have yet to use it, because my insurance is providing 18 hours a day. We use 95 hours a week for weekday nights and weekday days. We have 3 day shift nurses (soon to be 4) who cover the schedule, and 3 nurses on midnights, plus one of our day shift nurses covers some nights too. We then have Friday and Saturday midnights, and Saturday afternoons (so we can go to karate class and lunch).

We have one family friend who has kept Alexander for a couple hours twice; no other family or friends have been willing to help.

We have found that discharge planners at hospitals don't always know what they're doing; try calling your doctor (pulmonolgist, neurologist, etc) and asking for their social worker. The ENT we see has a social worker who only does trach kids and has been very helpful finding us the services we need. You might also try looking for your local "regional center" or talk with the school social workers for other ideas on places they can refer you for nursing.

jamie
01-24-2010, 01:55 PM
thank you for your replies and suggestions.

Wooders80
01-24-2010, 01:58 PM
My husband and I both work too (although I only work 3 days a week). Dominic goes to nursery (pre-school) so this is our child care and my parents help out too. Things are very different here in the UK in terms of the help working parents get, but one thing that is similar is just how hard it is trying to work and find suitable and affordable care for a child with a tracheostomy.

saywhatyouwill
01-24-2010, 02:54 PM
as laura says, it's different here. my husband and i both worked part time when emily was trached. we qualified for free nursery care but only in the afternoon. nursing just wasn't available to us during the day. i found the whole process of figuring out what we were entitled to to be disorganised and not easily accessible: you really have to ask, persist, and pester, to figure things out to the best standard available.

Louise D
01-24-2010, 04:43 PM
Hi, We are in Calif and have medi-cal, CCS and Cal-Optma, we get nursing for our son who is not on a vent. I'm not sure where you are in the state, but definitely try again. Try your medi-cal or CCS worker. PM me if you need more help.

Louise D

Alethia
01-24-2010, 07:36 PM
Your situation sounds extremely hard. I find it hard to believe that Evan doesn't qualify for nursing under your state's medicaid/medical program.

I live in the UK, and as everyone on this message board will tell you, I sing the praises of our National Health Service whenever I get the chance! To cut a long story short, we get all nights covered from 10pm-8am. On weekdays Angus has a carer from 8am-4pm. All the carers are specifically hired by the Home Vent Service and are trained in paediatric trach/vent care. I work 8.30am-2.30pm Mon-Fri. My partner works full time, often away from home for days/weeks. I am eternally grateful for all the help we get. I can't imagine how hard life would have been without it.

I hope you get some joy out of contacting your state scheme directly. Your social worker sounds a complete pillock!

drct1245
01-24-2010, 10:07 PM
Both my husband and I have worked full-time since Ayden came home. We had great full-time nursing for him and my work was extremely flexible since I had worked there so long.
Ayden came home on the vent and he qualified 16 hrs/day (actually we had really good nursing coverage from my insurance and my insurance qualified him for 16 hrs and then medicaid gave us 16 hrs...lol). Although it is tough finding nurses that have worked a pediatric case that involves a vent, many nurses are willing to learn and it's just weeding out the ones that don't work.

I would definitely seek out an agency in your area and see how much your son would qualify for.

Andiesurprise
01-25-2010, 01:59 AM
My husband and I work full time. I am a teacher and I have care from 8am - 5pm Monday to Friday. I also have night care. I do self managed care so I receive money from the government. But I find my own workers, train and orientate them. I do have a lady that certifies them for trach CPR after I have taught them what I know she reviews. I am responsible if anything goes wrong. But I am also the boss. We tried the government agencies sending people. But they would fall asleep or call in sick and then we would have no one. Now my girls are awesome and we have a great system. It is a little more scheduling and finacial organizing but worth it for us. Good luck

Baby1107
01-25-2010, 10:40 PM
Evan has medi-cal and california children's services, but when we left the hospital they said he did NOT quailfy for home nurses because he is on a vent. They ( his discharge planner and the social worker) said home nurses do not know how to care for vent patients. They told me I should ask people from church to help me out. I wonder how much more they would know about vents than a nurse? I wonder if this is a California problem because of our budget? I wonder if they expect me to leave him home alone? Like I said before he used to take care of himself even when he was as young as 8. I am afraid now even to leave him alone to go to the store let alone to work.
Sorry to ramble and rant, but I am pretty new to this, in fact we are at a milestone of being home from the hospital 20 days yay.


I am trying to contain myself...you have been fed a line of cr**! That is untrue..plain and simple. Of course Home health nurse do vents. I know because I have one who is vent trained...that said they are hard to come by properly trained. But they do exist. My son has medi-cal & ccs as well. We get 12-16 hrs per day of nursing care and he is NOT on a vent. Please find some help. Where are you located? We are in LA. Also do you have IHSS set up yet? If you need to please contact me.

Janis