Michele W Re: Need words of support for a family coming home

June 20, 2007

Dear Michele-

Thank you for your words of wisdom, I am forwarding them promptly. I remember

when was facing discharge and the case manager from our insurance felt

that the g-tube was " less care " and the trach was " more care " , therefore we

didn;t require any nursing. I accepted her word, as what did I know? was

our first child. Fortunately the nurses advised me differently, and in the end

what won our case manager over was I called her every morning at 5:00 am my

time. I only did this because this is when I was home getting ready to go to

the hospital and I knew she was three hours ahead of me.

It's hard to know to ask, and your words are persuasive.

Thank you.

Yuka

RE: Need words of support for a family coming home

Yuka-

I remember being told that we could refuse to go home without adequate

support. If this family knows that they are being sent home with an

unreasonable schedule, I would adamantly talk to the hospital about

requiring support before leaving. I wish we'd have known that back in the

day. I didn't even think about how unreasonable our schedule was until we

were home trying to live it. Then trying to have the energy to fight for

support was a challenge when I was crumbling from the stress and lack of

sleep. An agency staff helped with the letter-writing campaign to get

nursing. I couldn't have done it on my own under those conditions. I hate

to think of any family getting into that situation when it can, perhaps, be

avoided.

Does any family want to refuse to take their newborn home?? Of course not.

But there are programs in every state, I think, to support medically fragile

kids - to allow families to care for them in-home rather than in-hospital.

And certainly any insurance co would rather pay nursing hours than hospital

fees. How many families have the courage to say that they will not/cannot

meet their own child's needs? Probably very few if any at all. This could

be a quick lesson in advocating for their child by standing up to the

doctors and insurance co to say that they cannot care for their child alone

under these conditions and simply must have support in place before

discharge.

I have no idea if that approach will work, but it's what I would do if I

could go back in time.

Michele W

Aubrie's mom

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