INSURANCE Re: Hospital Discharge

[Guest guest]

Hi ,

Congratulations on bringing Logan home!! We also brought our son

Felix home after 3 months in the NICU at Boston Children's Hospital

(last June). He has a lot of the same issues - very wet or " juicy " as

you put it, trach, G-J tube, etc.

I can relate to your " middle class curse " statement. The social

worker at Children's hospital didn't even bother to talk to us until

we were already in the NICU for more than a month. When we were

getting discharged, the same social worker told me she spoke to our

insurance company and they said they wouldn't cover the nursing and

that we wouldn't qualify for a waiver program we have here in MA

called Kaileigh Mulligan which provides home nursing for families who

don't otherwise qualify for Medicaid. I was flabbergasted. Here was

our son who couldn't even be transferred to a regular " floor " at the

hospital because the nurses there said he was too involved and needed

24/7 care, but I was supposed to bring him home and essentially be

the full-time 24/7 nurse along with having a 2 1/2 year old son. The

social worker just said, " I know it isn't fair, I'm a single mom and

sometimes I think I should stop working and just go on the system "

Can you believe it? I couldn't, so I took matters into my own hands.

Days before we were discharged, I called my insurance company and

told them that if I could not get some nursing in the home, I did not

feel comfortable bringing my son home - it was too dangerous. This of

course was a complete lie - I couldn't wait to bring him home, but

the insurance company was much more willing to pay for 8 hours of

nursing a day for me than the $1500 a day NICU bill. This might be a

strategy you can try with your insurance company. Then, despite what

the social worker told me, I applied for our waiver program anyway

and they accepted us and now we have 112 hours a week of nursing.

Someone lese in the string mentioned it - but having a trach usually

gets you the maximum hours.

In my opinion, having a child with a trach with constant suctioning,

you MUST have a nurse. It is not safe for you to have full

responsibility for taking care of him medically 24 hours a day. It is

not like having to feed a newborn in the middle of the night - you

need to be alert and able to perform medical tasks at any hour. It

just isn't humanly possible to do it in my opinion - you will get

tired and possibly sleep through an alarm. You need to communicate

that to your insurance company. And look into programs in the state

you are in.

All of our wonderful nurses in the NICU told us that Felix would

thrive once he got home and boy were they right. Logan will recognize

that he is home and will have all of his family around him all the

time and will be content and grow and develop so fast. I look back at

pictures from our hospital days and can't even recognize Felix he has

changed so much! I wish you the best of luck and much joy in bringing

home your son!

in MA

Mom to Max 3 years old and Felix (Charger) almost 1!

>

>

>

> Logan is due to be discharged March 20th and I am soooo nervous. My

> husband and I just finished our 8 hour (individual) shifts and will

have

> our 24 hour shifts Saturday and Sunday. I don't know if all

hospitals

> require parent's to do that before discharge but Riley had us go

through a

> whole slew of equipment/med/trach training.

>

> I must say I was a bit overwhelmed at the beginning of my shift.

He was

> alarming like mad and the nurses kept popping in like I had no idea

what

> was going on......I just wanted to scream, " I have it under

control. " I

> hope it gets a little easier when he gets home. My main concern is

the

> trach and having him hooked up to the CPAP machine. The tubing is

so heavy

> that I'm afraid when I pick him up or move him that he will

decanulate

> himself. But I can't let that stop me for crying out loud. He

didn't get

> any of the love or attention he deserved the first three months of

his

> life. I can't wait to hold him for as long as I want.

>

> I was asked in a previous e-mail what the extent of his syndrome

is: He

> has had two laryngoscopies (left and right side in two separate

surgeries),

> malrotation surgery, G-tube surgery, a Nissen (sp) so he doesn't

have

> reflux and a tracheostomy. He tracks with his eyes a little but we

don't

> know to what extent he can see, the same for his hearing, they

believe he

> can hear but don't know to what extent. He has facial palsy so he

has no

> facial expressions, no ear lobes, and micropenis as well as very

low muscle

> tone. He does have tetralogy of Fallot and will need heart surgery

at nine

> months. He stays fisted most of the time but wears splints for

three hour

> periods during the day and at night. He is very " juicy " as we have

termed

> it. His secretions are in abundance. He's also a porker. He's

almost 12

> lbs?! But of course that's to the 24 cal formula they have him

on. He

> takes way too many medications. Two for calcium, two for the

secretions to

> try and minimize them, two diuretics to keep water off his lungs and

> kidneys, valium, a muscle relaxant, a multivitamin and one for

iron. It

> seems we're going to have to rent out a pharmacy just for him.

>

> Also the hospital had promised us some sort of nursing but our

insurance

> requires 50% copay....yeah right....who the heck can afford that.

It seems

> being middle class is a curse. You're danged if you do and danged

if you

> don't.

>

> I do have a question for the adults with Charge.....is there

anything that

> you wish could have been done differently when you were being

raised in

> regards to schooling, parenting, etc. Call me crazy but even

though Logan

> is three months, I'm concerned about how he will be viewed and

treated by

> others or if there is anything I can do to make his life more

fruitful so

> he doesn't feel he is any different than anyone else. Blessings to

you

> all.

>

> Any suggestions?!?

>

> Happy St. 's Day,

>

> e

> mom of Shane 4, Logan 3 Months (CHaRGE)

>

>

>

>

>

>

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[Guest guest]

AWWW When I read these post I just want to say I will come stay with you for

your first 48 hours at home LOL I still remember like it was yesterday ...

THINKING oh my god you expect ME?? to do this my self ???? then like after a

week

at home you settle in to a routine and think oh this isn't so bad ... then

when I had baby number 2 I was terrified the first day home alone with both a

week later though I found myself sitting on the couch with one kid laying on

my feet one on my lap, typing one handed on my cordless keyboard while

suctioning Biilys trach with the other hand, all the while leaning over Robbie

who was

breast feeding at the same time and thinking this has got to be EXTREME multi

tasking LOL...

Have you looked into social security? I know in NY State it doesn't matter

what you make the Medicaid part will pick you up for back up insurance I have

friends who make a lot of money and have state jobs with state insurance

and still had things their insurance would not cover but the back up Medicaid

would cover. I believe that is a federal program. Someone suggested you refuse

to leave the hospital until they get you nursing VERY good idea (I am a nurse

now and work in a hospital and yes this does work) you need at least 8 hours

a day cause you got to sleep and maybe shower once in awhile but tell them you

want 16 you may get 12 ordered but only 8 hours worth of actual nurses LOL

Make sure the doctors are wording The order for nursing right with things like

" child is at high risk for death with out 24 hours observation " the scarier it

sounds the more likely it will work and saying things like my lawyer is

looking into this as well works very well I never even HAD a lawyer LOL.... I

got

very good at fighting insurance companies (doctors and everyone else LOL)

are right I have a 3 year old " helping " me now if you need any advice feel free

to email me at mchicken6@...

mom to C.H.A.R.G.E.r 9/30/01-8/3/03 and Robbie 3/27/03

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