RE: Need words of support for a family coming home

[Guest guest]

Oh Yuka

this all sounds so familiar, and one which we battle with daily, I cant send

this family any words of encouragement,

its so hard and frustrating, we had nurses in for 2 weeks after Amélies

tonsils were removed and they scored how

many times her sats monitor alarmed and they had to suction her, she was as

many as 39 times in one night!!

my heart goes out to this new family! and makes me sad that we are expected

to live like this!

I have been awarded 4 nights today which is starting tonight and

alternating, for us as a family, it

means we finally get some nights off!

sorry I can not be more positive I know what is coming for this family,

love Les x

>

> 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.

>

> The parents have had a trial night with their beloved son at the hospital

> to find themselves getting no sleep at all - perhaps an oversensitive

> monitor - but alarms ringing every few minutes. The mom is understandably

> feeling overwhelmed and concerned about meeting the challenge of the

> monitors and her baby's well being. Natural anxieties any new mother has -

> augmented by the previous weeks of " critical care " in an NICU environment.

> Parents are delightful, adoring, highly capable and resoundly intelligent -

> with the self-awareness to already know what sleep deprivation will

> ultimately do to them....

>

> Any words of support, encouragement and support would be greatly

> appreciated-

>

> Practical point - can alarms ringing through the night create a situation

> of medical necessity whereas an insurance provider might be persuaded to

> provide home nursing?

>

> Thank you all in advance-

>

> Yuka

>

>

[Guest guest]

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

[Guest guest]

Yuka,

I double what Michele said. I wish I could lie to them and tell them it

will be okay, but I can't.

This is exactly what happened to us! We were stuck in a room with all the

equipment as a " trial " to get use to all of it while in the hospital. It is

such a joke that they do this. I thought because they were sending him home

meant he was stable enough for us to take care of him. It's hard enough to

take care of a newborn without problems. I had no medical training etc.

What did I know? Nothing. But I learned fast. I pleaded with insurance to

give me some nursing. Finally I got 8 hours. It wasn't enough.

ended up back in the hospital worse than ever after weeks of bringing him

back and forth to the doctors. He should have never been released. He was

in very bad shape and thank goodness this nurse I had recognized that

whenever he was fed through his tube his breathing got worse. He finally

ended up back in the hospital with pneumonia and was in the hospital for an

additional 4 months. When it was time to bring him home again I completely

REFUSED unless I got AT MINIMUM 16 hours of nursing. I just totally refused

unless the nursing was set. I love my son and it was to make sure he would

be well taken care of that I refused to take him home. Plus, he couldn't go

out or even be left unsupervised because of his breathing and eating

schedule and was on the monitors. It took both me and the nurse to care for

him. I had a 2.5 year old as well. I ended up getting 24 hours of nursing

care.

Unless you know this, you don't know any different and think what they are

telling you must be true. It's not.

Debbie Matasker mom to 10 with CHARGE, 12, andra 8

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

[Guest guest]

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 acheive 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.

:-)

Need words of support for a family coming home

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.

The parents have had a trial night with their beloved son at the hospital to

find themselves getting no sleep at all - perhaps an oversensitive monitor - but

alarms ringing every few minutes. The mom is understandably feeling overwhelmed

and concerned about meeting the challenge of the monitors and her baby's well

being. Natural anxieties any new mother has - augmented by the previous weeks of

" critical care " in an NICU environment. Parents are delightful, adoring, highly

capable and resoundly intelligent - with the self-awareness to already know what

sleep deprivation will ultimately do to them....

Any words of support, encouragement and support would be greatly appreciated-

Practical point - can alarms ringing through the night create a situation of

medical necessity whereas an insurance provider might be persuaded to provide

home nursing?

Thank you all in advance-

Yuka

[Guest guest]

Yuka-

I can't remember where I was recently, but there was discussion among folks

who knew that " not covered " is not a final word in insurance. Many things

that aren't covered in the plan as written can be covered when the

alternative is to cover a lengthy hospitalization.

I wish there was a way to instantly give new parents the wisdom and

confidence that come with " been there, done that " . Just as I'd like to wave

my magic wand and give the wisdom of years to my teen! I hope this family

can use our suggestions to get things in order for themselves and their

baby. It's not just the baby that will suffer if support is not provided.

It's the family as well that will fall apart in so many little ways. We all

know, don't we?

Michele W

[Guest guest]

hugs that wat i like to give love u all

>

> 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 acheive 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.

>

> :-)

>

> Need words of support for a family coming home

>

> 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.

>

> The parents have had a trial night with their beloved son at the hospital

> to find themselves getting no sleep at all - perhaps an oversensitive

> monitor - but alarms ringing every few minutes. The mom is understandably

> feeling overwhelmed and concerned about meeting the challenge of the

> monitors and her baby's well being. Natural anxieties any new mother has -

> augmented by the previous weeks of " critical care " in an NICU environment.

> Parents are delightful, adoring, highly capable and resoundly intelligent -

> with the self-awareness to already know what sleep deprivation will

> ultimately do to them....

>

> Any words of support, encouragement and support would be greatly

> appreciated-

>

> Practical point - can alarms ringing through the night create a situation

> of medical necessity whereas an insurance provider might be persuaded to

> provide home nursing?

>

> Thank you all in advance-

>

> Yuka

>

>

[Guest guest]

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 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.

The parents have had a trial night with their beloved son at the hospital to

find themselves getting no sleep at all - perhaps an oversensitive monitor - but

alarms ringing every few minutes. The mom is understandably feeling overwhelmed

and concerned about meeting the challenge of the monitors and her baby's well

being. Natural anxieties any new mother has - augmented by the previous weeks of

" critical care " in an NICU environment. Parents are delightful, adoring, highly

capable and resoundly intelligent - with the self-awareness to already know what

sleep deprivation will ultimately do to them....

Any words of support, encouragement and support would be greatly appreciated-

Practical point - can alarms ringing through the night create a situation of

medical necessity whereas an insurance provider might be persuaded to provide

home nursing?

Thank you all in advance-

Yuka