in Ma Re: Yuka-Need words of support for a family coming home

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Dear -

The baby is not trached, and post his gtube and fundoplication, his oral and

nasal cavities have been adorably healthy and dry, which pleases me to no end.

At this point always looked and sounded like he had just been rescued from

drowning along with having recently caught a nasty head/chest cold.

Their trial night was plagued by both faulty monitors and faulty oxygen set up

(O2 not traveling through the humidifier - therefore not to the baby at all).

Monitors alarming every three minutes for no good reason, even after resolving

the oxygen set up, and the cleaning crew was scouring the floor outside their

room with industrial machines! Definitely horrid conditions for a trial night

with one's baby and his equipment. The " parent sleep deprivation " test went well

- the mother affirmed what she already knew - she is a person who really

requires adequate sleep for a sense of well being.

However, the sleep study did have a reading of 21 - which even if incorrect, the

baby's numbers are probably still far off from the normal 4. The pulmonologist

is recommending a pulse oxymeter, which the insurance flatly denies covering.

Hopefully the body of responses on the list to advocate for sufficient care for

their son, not only in his best interests, but as an entitlement to adequate

care, will support the family through this challenging transition. Coming to

grips with the diagnosis and prognosis is hard enough. Having to advocate for

rights for conditions that are still vibrantly new seems even more so.

Thank you again-

Yuka

Re: Yuka-Need words of support for a family coming home

Yuka~

I see we're all on the same page-this baby should not be discharged in this

condition. Nor should the parents be asked to care for him alone.

I know this isn't the " helpful words " and support they were looking for-

but it's truth that will protect and possibly save their child.

Good luck,

in Ma.

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