Debbie Re: Need words of support for a family coming home

[Guest guest]

Dear Debbie-

Thank you for your words of wisdom, I am forwarding them to the mom shortly. I

think it is horrible what you and had to endure, but I am hopeful that

good will be made of it and this precious baby with CHARGE will not have to

suffer at the financial judgment of the insurance carriers. It is so hard to

know to ask, especially for the highly intelligent and self-sufficient, and your

story is compelling.

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