Re: Need words of support for a family coming home

[Guest guest]

Dear -

Thank you for your thoughtful concerns, I will forward them to the family

shortly. I am sure every bit of additional perspective and support is of great

help. I am particularly pleased that with the body of posts encouraging the

family to push for support at home that they will feel confident, if not

entitled, to ask for what is reasonable. Coming to grips with the diagnosis and

prognosis is hard enough. Having to advocate for rights for conditions that re

still vibrantly new is even more so.

There seems to be a need for a pulse oxymeter made by the Pulmonologist, however

it is the stated policy of the insurance that this type of equipment is not

covered. Their trial night was plagued by both faulty equipment, faulty oxygen

set up (not traveling through the humidifier - therefore not to the baby at all)

and the cleaning crew doing nightly floor scouring with industrial machines!

Definitely horrid conditions for a trial night with one's baby and his

equipment.

Thank you again-

Yuka

Re: Need words of support for a family coming home

Dear Yuka,

Michele has made excellent points. The social worker at the hospital would be

a good resource to discuss these issues with and to see what improvements can be

made in the plan to go home. Going home with the knowledge that at least one

parent might be awake all night, every night, is not acceptable.

I am noticing that there is the potentiality of a heart monitor going home

with the family. In my experience it is critical to be sure the decision is made

prior to the homecoming as it is more difficult to achieve changes once out of

the hospital in most cases.

If the child has heart or breathing issues, a heart monitor makes a lot of

sense. Until the cause of the excessive alarms is determined, a monitor seems

essential. If the alarms are due to an overly active monitor, a trial in the

hospital can be made with a monitor that is set appropriately.

In our case, we always wished we had a pulse oximeter at home. Each case is

different, so this may not be what the family needs, but for us it would have

been great to use. We didn't have a lot of difficulty with heart readings, but

the Oxygen level was always an issue and can be read through the pulse oxymeter.

Give our best to the family.

:-)

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