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

[Guest guest]

Dear -

You are absolutely right about the family needing support at home if the baby

goes home in his current condition. I am encouraged that the consistency of

that message from us as a list on the whole has really empowered them in this

matter.

I am sorry I was unclear about the monitor. The family is set up for homecare

with an Apnea monitor, which the insurance will cover. There has been some

preference for the pulse oxymeter as being more useful to this specific child,

but the insurance will not cover that.

I am hopeful that Cardiology will decide to not discharge the darling baby yet

and go ahead with the triple repair of his heart. At this point the

coartication is narrowing further, putting more pressure on the VSD - which is

causing more blending of the oxygenated and oxygen depleted bloods, putting more

demands on his precious heart. I can't help but feel with these pressing heart

challenges out of the way the baby will have less fluid in his lungs (as a

result of the congestive heart failure from the excessive demands), be able to

oxygenate well on his own (eliminating the necessity for ) O2 and monitoring)

and simply ameliorate and simplify the condition of the child overall...... it

is a sobering decision - balancing the projected ability of the baby to recover

well from surgery versus the projected ability of the baby to maintain health

and growth under his current challenges...

Thank you for your replies - you have given so much heart and thought, and I

know they are deeply grateful.

best,

yuka

Re: Need words of support for a family coming home

This mom needs to get the child's hospital team behind them to insist the

child doesn't come home until some nursing is in place. This was the stance

Evan's team gave our insurance when they said that they weren't going to pay for

home nursing. When faced with the choice of no finite hospital release date or

some temporary home nursing, low and behold the insurance company assigned us a

case manager and traded some other benefits so we could get 120 hrs of nursing.

We made this last 2 months, and it really helped. The team needs to make it

clear if the parents are sleep deprived, they aren't going to be able to care

for the child.

(mom to Evan, 23 months)

Yuka Persico yuka@...> wrote:

Dear -

>snip< 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

Yuka Persico yuka@...> wrote:

Dear Beloved CHARGE Family-

So exciting, a darling baby boy with CHARGE is ready to come home. The

equipment has already been delivered to the home: O2, feeding pump for

continuous feeds into his Gtube, and potentially a heart monitor. Lovely baby

has had a sleep study on 16th June to assess oral secretions, CO2 emissions etc.

>snip<

.