ander in Oregon

[Guest guest]

My goodness, those are very many accomplishments for such a young fellow.

He certainly has been in my thoughts as we've waited for word.

I can't answer any questions.

Just wanted to give a hip hip hooray for doing so well.

;-)

in Ma. ( 21 yrs)

[Guest guest]

Hi everyone

is still at Doernbecher. He had the heart surgery on October 19.

He has had a slow recovery and dealing with issues with breathing,

but the surgery was successful. He is now off the respirator and all

tubes except his G.tube and a little tiny bit of oxygen through nasal

canula. He has fluid retention, and is being given 3 diuretics, and

(get ready for this!)he is being given Viagra for pulmonary

hypertension. We hope that they can get his meds and breathing all

figured out and maybe go home next week.

Can some of you share some of the issues you encountered with your

kids who had heart surgery? was pulmonary hypertension a problem? and

were you told that your child may have chronic lung disease from

damage prior to surgery? and does the chronic really mean " forever "

or just until they mature and develop new lung tissue?

He is being weined from the Methadone and the Ativan now, but

unfortunately he will need 2 more surgeries (neuro) in the near

future, so he will probably be back on these meds again.

Any info you can share regarding all this will be greatly appreciated.

Thank you all,

xxx000 Liz

[Guest guest]

Thank you !

Yes, He has come a long way for a little guy who is only 4 months today! He

has spent so much of his short life in the hospital so far. But he is a

tough one! and so cute. I need to post some pictures. Where is the best

place for that??? I know you cant do it here.

xxx000

Liz

-- Re: in Oregon

My goodness, those are very many accomplishments for such a young fellow.

He certainly has been in my thoughts as we've waited for word.

I can't answer any questions.

Just wanted to give a hip hip hooray for doing so well.

;-)

in Ma. ( 21 yrs)

[Guest guest]

wow i know im gonan sound poliitcal here but those meds r adictirve stupid

drs for giving them LOL as for the toerh stuff i have never had them and

donno but hope he gets better soon

>

> Hi everyone

>

> is still at Doernbecher. He had the heart surgery on October 19.

> He has had a slow recovery and dealing with issues with breathing,

> but the surgery was successful. He is now off the respirator and all

> tubes except his G.tube and a little tiny bit of oxygen through nasal

> canula. He has fluid retention, and is being given 3 diuretics, and

> (get ready for this!)he is being given Viagra for pulmonary

> hypertension. We hope that they can get his meds and breathing all

> figured out and maybe go home next week.

> Can some of you share some of the issues you encountered with your

> kids who had heart surgery? was pulmonary hypertension a problem? and

> were you told that your child may have chronic lung disease from

> damage prior to surgery? and does the chronic really mean " forever "

> or just until they mature and develop new lung tissue?

> He is being weined from the Methadone and the Ativan now, but

> unfortunately he will need 2 more surgeries (neuro) in the near

> future, so he will probably be back on these meds again.

> Any info you can share regarding all this will be greatly appreciated.

> Thank you all,

> xxx000 Liz

>

>

>

[Guest guest]

Liz ,

My too had open heart surgery...the recovery was long and there are "

side effects " .. now has a bundle branch block and elevated pressure in his

left ventricle.. his profusion is less that 100%... However he is seen by a

cardiologist every 6 months and monitored. He will eventually have to have

another surgery but the doctor is waiting...My is on no meds and is growing

quite well. He is 9.

He participate fully in Physical education.The teacher is aware of his issues

and has not seen it slow him down.

Ellen mom to 9

[Guest guest]

Liz,

I will be praying can come home next week, sorry I cant

give you to much information. Eva has had 2 heart surgeries and came

threw well with both of them.

I hope you get answers soon and all are home and well.

Hugs,

Crystal mom to (10), (3), and Eva (19 month old CHARGEr)

wife to Dan in Illinois

>

> Hi everyone

>

> is still at Doernbecher. He had the heart surgery on October

19.

> He has had a slow recovery and dealing with issues with breathing,

> but the surgery was successful. He is now off the respirator and

all

> tubes except his G.tube and a little tiny bit of oxygen through

nasal

> canula. He has fluid retention, and is being given 3 diuretics,

and

> (get ready for this!)he is being given Viagra for pulmonary

> hypertension. We hope that they can get his meds and breathing all

> figured out and maybe go home next week.

> Can some of you share some of the issues you encountered with your

> kids who had heart surgery? was pulmonary hypertension a problem?

and

> were you told that your child may have chronic lung disease from

> damage prior to surgery? and does the chronic really

mean " forever "

> or just until they mature and develop new lung tissue?

> He is being weined from the Methadone and the Ativan now, but

> unfortunately he will need 2 more surgeries (neuro) in the near

> future, so he will probably be back on these meds again.

> Any info you can share regarding all this will be greatly

appreciated.

> Thank you all,

> xxx000 Liz

>

[Guest guest]

After heart surgery, Maxwell was a totally different kiddo...for the better! He

was so less medically fragile...makes a big difference to have a heart without

so many extra holes I suppose!!! He came home on some of the drugs (morphine

and atavin) but we managed that just fine and were slowly weaned off.

Max does have pulmonary hypertension which has required him to be on oxygen at

times even when his sats don't appear there is a problem. And he does have

" chronic " long disease from his prematurity...I too don't like that infamous

word " chronic " because it sounds like such a life sentence. And in some ways, I

suppose it is but each month, each year it will get better (from what I hear).

And I have already seen quite a difference in the year post surgery. It is

supposed to improve as they grow...the lungs actually develop new...oh what is

that word!?!? Someone will chime in and remember that word! I am working on

little sleep this morning!

Anyway congrats on going home soon...and thank you for being such a wonderful

grandmother. He is a lucky lil' guy!

What neuro surgeries does he need?

liz_dolz wrote:

Hi everyone

is still at Doernbecher. He had the heart surgery on October 19.

He has had a slow recovery and dealing with issues with breathing,

but the surgery was successful. He is now off the respirator and all

tubes except his G.tube and a little tiny bit of oxygen through nasal

canula. He has fluid retention, and is being given 3 diuretics, and

(get ready for this!)he is being given Viagra for pulmonary

hypertension. We hope that they can get his meds and breathing all

figured out and maybe go home next week.

Can some of you share some of the issues you encountered with your

kids who had heart surgery? was pulmonary hypertension a problem? and

were you told that your child may have chronic lung disease from

damage prior to surgery? and does the chronic really mean " forever "

or just until they mature and develop new lung tissue?

He is being weined from the Methadone and the Ativan now, but

unfortunately he will need 2 more surgeries (neuro) in the near

future, so he will probably be back on these meds again.

Any info you can share regarding all this will be greatly appreciated.

Thank you all,

xxx000 Liz

Amy McKinley

Mom to MIGHTY MAX -- cHArGE, 15 months old (13 months corrected)

maxupdate.blogspot.com

---------------------------------

Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

[Guest guest]

Aveoli? (You mean the little air sacs, right?)

(mom to Evan, 16 months)

Amy McKinley wrote:

After heart surgery, Maxwell was a totally different kiddo...for the

better! He was so less medically fragile...makes a big difference to have a

heart without so many extra holes I suppose!!! He came home on some of the drugs

(morphine and atavin) but we managed that just fine and were slowly weaned off.

Max does have pulmonary hypertension which has required him to be on oxygen at

times even when his sats don't appear there is a problem. And he does have

" chronic " long disease from his prematurity...I too don't like that infamous

word " chronic " because it sounds like such a life sentence. And in some ways, I

suppose it is but each month, each year it will get better (from what I hear).

And I have already seen quite a difference in the year post surgery. It is

supposed to improve as they grow...the lungs actually develop new...oh what is

that word!?!? Someone will chime in and remember that word! I am working on

little sleep this morning!

Anyway congrats on going home soon...and thank you for being such a wonderful

grandmother. He is a lucky lil' guy!

What neuro surgeries does he need?

liz_dolz wrote:

Hi everyone

is still at Doernbecher. He had the heart surgery on October 19.

He has had a slow recovery and dealing with issues with breathing,

but the surgery was successful. He is now off the respirator and all

tubes except his G.tube and a little tiny bit of oxygen through nasal

canula. He has fluid retention, and is being given 3 diuretics, and

(get ready for this!)he is being given Viagra for pulmonary

hypertension. We hope that they can get his meds and breathing all

figured out and maybe go home next week.

Can some of you share some of the issues you encountered with your

kids who had heart surgery? was pulmonary hypertension a problem? and

were you told that your child may have chronic lung disease from

damage prior to surgery? and does the chronic really mean " forever "

or just until they mature and develop new lung tissue?

He is being weined from the Methadone and the Ativan now, but

unfortunately he will need 2 more surgeries (neuro) in the near

future, so he will probably be back on these meds again.

Any info you can share regarding all this will be greatly appreciated.

Thank you all,

xxx000 Liz

Amy McKinley

Mom to MIGHTY MAX -- cHArGE, 15 months old (13 months corrected)

maxupdate.blogspot.com

---------------------------------

Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

[Guest guest]

-- Re: in Oregon

Thanks for your reply. .I see is not alone. The pulmonary hypertension

is a very scary diagnosis, since most of the time the prognosis is not good,

from what I know, at least for adults.

also needs to have the soft spot on the back of his head fixed. They

will put a little patch there because it will not " fuse " on its own, like

its supposed to do. He has a little tiny protrusion there.Also, at the same

time, the neurosurgeon will fix the little whole in his low back, because

they are afraid it goes to his spinal cord, even though the MRi did not show

or could not show, but it can be very dangerous because infection could go

to the spinal cord, or he could actually have problems with incontinence or

?????spinal bifida--like issues. Any other kids out there with these types

of problems? This CHARGE syndrome is soooooooooooo complicated. It seems it

has alot to do with dysgenesis of so many parts of the body.

Liz

Aveoli? (You mean the little air sacs, right?)

(mom to Evan, 16 months)

Amy McKinley wrote:

After heart surgery, Maxwell was a totally different kiddo...for the better!

He was so less medically fragile...makes a big difference to have a heart

without so many extra holes I suppose!!! He came home on some of the drugs

(morphine and atavin) but we managed that just fine and were slowly weaned

off.

Max does have pulmonary hypertension which has required him to be on oxygen

at times even when his sats don't appear there is a problem. And he does

have " chronic " long disease from his prematurity...I too don't like that

infamous word " chronic " because it sounds like such a life sentence. And in

some ways, I suppose it is but each month, each year it will get better

(from what I hear). And I have already seen quite a difference in the year

post surgery. It is supposed to improve as they grow...the lungs actually

develop new...oh what is that word!?!? Someone will chime in and remember

that word! I am working on little sleep this morning!

Anyway congrats on going home soon...and thank you for being such a

wonderful grandmother. He is a lucky lil' guy!

What neuro surgeries does he need?

liz_dolz wrote:

Hi everyone

is still at Doernbecher. He had the heart surgery on October 19.

He has had a slow recovery and dealing with issues with breathing,

but the surgery was successful. He is now off the respirator and all

tubes except his G.tube and a little tiny bit of oxygen through nasal

canula. He has fluid retention, and is being given 3 diuretics, and

(get ready for this!)he is being given Viagra for pulmonary

hypertension. We hope that they can get his meds and breathing all

figured out and maybe go home next week.

Can some of you share some of the issues you encountered with your

kids who had heart surgery? was pulmonary hypertension a problem? and

were you told that your child may have chronic lung disease from

damage prior to surgery? and does the chronic really mean " forever "

or just until they mature and develop new lung tissue?

He is being weined from the Methadone and the Ativan now, but

unfortunately he will need 2 more surgeries (neuro) in the near

future, so he will probably be back on these meds again.

Any info you can share regarding all this will be greatly appreciated.

Thank you all,

xxx000 Liz

Amy McKinley

Mom to MIGHTY MAX -- cHArGE, 15 months old (13 months corrected)

maxupdate.blogspot.com

---------------------------------

Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

[Guest guest]

Dear Liz,

I hope that continues to improve speedily and can be home soon. Being off

the respirator is a huge step.

Regarding the problem with the spinal cord, we have a friend whose daughter in

Portland had a somewhat similar surgery. Her condition was called a 'tethered'

spinal cord. Her repair helped her in some ways. They expecially hoped it

would help her with incontinence, which it did. She doesn't have CHARGE, but

does have vision difficulties, is profoundly deaf, had a heart condition, had

language acquisition difficulty originally, and was fed with a g-tube initially.

Her condition is attributed to cytomegalovirus. She is doing very well now as a

middle schooler.

Re: in Oregon

Thanks for your reply. .I see is not alone. The pulmonary hypertension

is a very scary diagnosis, since most of the time the prognosis is not good,

from what I know, at least for adults.

also needs to have the soft spot on the back of his head fixed. They

will put a little patch there because it will not " fuse " on its own, like

its supposed to do. He has a little tiny protrusion there.Also, at the same

time, the neurosurgeon will fix the little whole in his low back, because

they are afraid it goes to his spinal cord, even though the MRi did not show

or could not show, but it can be very dangerous because infection could go

to the spinal cord, or he could actually have problems with incontinence or

?????spinal bifida--like issues. Any other kids out there with these types

of problems? This CHARGE syndrome is soooooooooooo complicated. It seems it

has alot to do with dysgenesis of so many parts of the body.

Liz

Aveoli? (You mean the little air sacs, right?)

(mom to Evan, 16 months)

Amy McKinley wrote:

After heart surgery, Maxwell was a totally different kiddo...for the better!

He was so less medically fragile...makes a big difference to have a heart

without so many extra holes I suppose!!! He came home on some of the drugs

(morphine and atavin) but we managed that just fine and were slowly weaned

off.

Max does have pulmonary hypertension which has required him to be on oxygen

at times even when his sats don't appear there is a problem. And he does

have " chronic " long disease from his prematurity...I too don't like that

infamous word " chronic " because it sounds like such a life sentence. And in

some ways, I suppose it is but each month, each year it will get better

(from what I hear). And I have already seen quite a difference in the year

post surgery. It is supposed to improve as they grow...the lungs actually

develop new...oh what is that word!?!? Someone will chime in and remember

that word! I am working on little sleep this morning!

Anyway congrats on going home soon...and thank you for being such a

wonderful grandmother. He is a lucky lil' guy!

What neuro surgeries does he need?

liz_dolz wrote:

Hi everyone

is still at Doernbecher. He had the heart surgery on October 19.

He has had a slow recovery and dealing with issues with breathing,

but the surgery was successful. He is now off the respirator and all

tubes except his G.tube and a little tiny bit of oxygen through nasal

canula. He has fluid retention, and is being given 3 diuretics, and

(get ready for this!)he is being given Viagra for pulmonary

hypertension. We hope that they can get his meds and breathing all

figured out and maybe go home next week.

Can some of you share some of the issues you encountered with your

kids who had heart surgery? was pulmonary hypertension a problem? and

were you told that your child may have chronic lung disease from

damage prior to surgery? and does the chronic really mean " forever "

or just until they mature and develop new lung tissue?

He is being weined from the Methadone and the Ativan now, but

unfortunately he will need 2 more surgeries (neuro) in the near

future, so he will probably be back on these meds again.

Any info you can share regarding all this will be greatly appreciated.

Thank you all,

xxx000 Liz

Amy McKinley

Mom to MIGHTY MAX -- cHArGE, 15 months old (13 months corrected)

maxupdate.blogspot.com

---------------------------------

Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

[Guest guest]

> >

> > Hi everyone

> >

> > is still at Doernbecher. He had the heart surgery on

October

> 19.

> > He has had a slow recovery and dealing with issues with

breathing,

> > but the surgery was successful. He is now off the respirator and

> all

> > tubes except his G.tube and a little tiny bit of oxygen through

> nasal

> > canula. He has fluid retention, and is being given 3 diuretics,

> and

> > (get ready for this!)he is being given Viagra for pulmonary

> > hypertension. We hope that they can get his meds and breathing

all

> > figured out and maybe go home next week.

> > Can some of you share some of the issues you encountered with

your

> > kids who had heart surgery? was pulmonary hypertension a

problem?

> and

> > were you told that your child may have chronic lung disease from

> > damage prior to surgery? and does the chronic really

> mean " forever "

> > or just until they mature and develop new lung tissue?

> > He is being weined from the Methadone and the Ativan now, but

> > unfortunately he will need 2 more surgeries (neuro) in the near

> > future, so he will probably be back on these meds again.

> > Any info you can share regarding all this will be greatly

> appreciated.

> > Thank you all,

> > xxx000 Liz

> >

>

Hey Liz,

My son, Wyatt, also has chronic lung disease, but his is from being

a 28 weeker. My understanding is that he will grow out of it once

he gets bigger and has new and healthy lung tissue. We were almost

there just over a year ago (he was on 3/16 L of O2) but then he got

Adenovirus and almost died. He's now on 1 1/2 L which is better

than he was just a couple months ago.

We are also very familiar with Methadone and Ativan. The first time

we weaned him off those it was very difficult. Amazing that it's

gotten easier each time.

My prayers are with you and I hope that you are home soon.

Mother to Wyatt - 2 Charger, and Toby 9 months.

Wife to in Colorado