Re: Help! New Trach... long hospital stay (posting for therapy!)

September 21, 2004

hi kristi,

my daughter was trached for her first 8 yersa of life. (she was

decannulated 1 yr ago). she also had AV repair at 1yr that was a horrible

ordeal,

pacemaker, infections, arrest, comas etc, etc.

we had 24 horus/day nursing than 16hrs/. i hated it but knew i needed the

help. I wen tthrough a few agencies and a lot of nurses. they have to " fit "

in with your family. you need to set guidelines without offending them. one

nurse told me early on that erika was lucky b.c she had 9 mommies. i got

rid of her. I wanted so much to be amother, and we tried for many years, and

finally it happens and i had to share the whole experience with others. here

we are 9 yrs later, i still hve night nursing, but the same ones have been

with me for years. i still hate the interference in my life. my husband also

lieks to lounge in boxers! is on a pulse ox and devloeped sleep apena

after she was decannualted so she is on BIPAP. I am assuming my insurance

will cut the nursing in a few months. i am scared, b/c she has laways had

someone watch her at night,when we dont have a nurse we sleep on her floor. we

used to take them on vacation with us, but now we dont, we needed to figure it

all out. and i love vacations with just us. i so worry that something will

happen to her at night, that i sleep with one eye open, next to her.

it will take time to get used to the nruses. i try and make it a pleasant

environemtn for them, coffee, etc. someimtes i feed them, if we are ordering

apizza or somehtintg. but we need our family time. they used to follow me

around the hosue talking, adn it frove me crazy, or we would watch a movie and

they would come to our living room and talk. to some this works for them,

for me i am a private person and need my space.

good luck, it will work out. use the nurses ot help you learn, and rememebr

it most likely wont be forever. we were told erikas trach would proably

never come out, so i kept searching for a doctor that beleived in erika and

help

us, after 3 attempts its out!

god bless you guys.

cathie, mo to 9 yrCHARGEr

September 22, 2004

Kristi-

I have no trach experience to share, but I am awed and inspired by/ your

/strength in dealing with such a crazy time. I know how overwhelmed I

was still feeling when Aubrie was 17 months old, and our issues were

nothing compared to what you are going through. I know that the folks

who are using nursing care will have grand pearls of wisdom for you. We

had a brief period of nursing care 2 nights a week. It was so long ago

and for a short time so I don't have any clear recollections. Good luck

to you and hugs to your babydoll.

Michele W

Aubrie's mom (6 yrs)

September 22, 2004

Kristi.

Where do you live. I don't remember, if you had told the list.

johncampanale@...

http://home.comcast.net/~briannacampanale

http://home.comcast.net/~benjamincampanale

<><><><><><><><><><><><><><><><><><><><><><>

HEDGEBUILDERS---Protecting YOUR family and you......

www.hedge.org/sr/0074.htm

" Making the Internet Safe for Work and Play "

<><><><><><><><><><><><><><><><><><><><><><>

Help! New Trach... long hospital stay (posting for

therapy!)

Hi to everyone!

It's been a while since I've posted... but I read all postings and

continue to be indebted to the advice and wisdom you all provide and

awed by your strength and the strength of your children.

Our daugther Gracie (17 months) was admitted to the hospital on

August 25th for heart surgery - ASD repair and mitral valve repair.

Since that surgery, Gracie (as, it seems many CHARGErs do... had

several " surprises " in store) had a pacemaker placed and had a

tracheostomy.

The pacemaker was not a huge surprise - it turned out that after the

initial surgery, her heart just wasn't firing in a perfect rhythm...

so two weeks ago a permanent pacemaker was inserted. The ASD was

much larger (so was her heart in general... largest the surgeons had

seen in someone her age) than they thought, so the repair of that

hole affected her heart's ability to regulate itself.

The tracheostomy, however, was not planned... It was done last

Wednesday after several attempts to take her off of the ventilator.

Gracie has always had a delicate airway, but had always managed

well. After the surgery on the 25th, she was extibated the same

night and went back on the ventilator after approximately 48 hours

due to her sats dropping and the inability to recover them. The

following Monday, she was extibated again and this time only went 9

hours before her CO2 was too high and her breathing too labored. She

was extibated AGAIN and had bronchoscopy done to check out her

airway... although very angry looking, it was small and open... 30

hours later (after fighting through a practically non-existent

airway) she had another bronch and was re-intibated. So, two weeks

ago (the same day she had the pacemaker placed), she had laser on her

upper-airway to try and " shave " down some of the granulation tissue

and the excess cartilage... The plan was to wait 48 hours and take

her off the ventilator and see what happened... We ended up waiting 4

days and she lasted exactly 30 hours again with a CO2 at 90... so,

last Wednesday she received the trach.

I cannot explain how inspired I am by her strength and her will to

survive... when we saw the photos of her airway and realized what she

had struggled through, we were amazed. Her fight gave us more

strength... it was fuel for the road ahead. Of course, when she is a

defiant teenager testing me (which I actually look forward to!), I

will try very hard not to let her know that I have never been more

inspired or impressed by anyone's strength as I am hers!

My husband and I, of course, went through all the ranges of emotion

that the trach involved... we mourned the fact that it will be a

while before we can hear her laugh - the sweetest sound ever. That

our lives, albeit temporarily (the definition of temporary remains to

be learned) are dramatically changed... But I cannot tell you the

relief we felt when we saw how comfortable and relaxed she was the

minute they rolled her out of the O.R. It was the first time we had

seen her face uncovered in three weeks... No tape, no masks, just her

beautiful little face!

So, here we are, one week post-trach and tomorrow it will be changed

for the first time... We are learning the care... and she is so

tolerant! She is still on the ventilator (CPAP with pressure

support) because in addition to all these challenges, she had a

diaphram issue, a bowel issue, has had horrible withdrawals (she was

basically sedated for three weeks) and now has an infection... Her

poor little body is so picked over that they can't get another IV in

her... So... she's getting antiobiotics through the ventilator and

will hopefully be put on plain CPAP and eventually just oxygen or a

mist to go home.

Now that she's more stable and working on getting over the infection

and the withdrawals, we are trying to deal with the changes at home...

It's in this area that I seek advice...

Nursing care... discharge planning has been working on this since the

last day she was re-intibated... hopefully we won't have a several

week wait... but, as you know, we cannot be released without nursing

care established... And since I can't bring home any of the nurses we

have come to know and love at the hospital... we will be cautiously

and nervously allowing a complete stranger into our home...

It's hard enough when you have a stranger in your home... there with

all of your personal items and information... but this person will be

with our most precious and personal " item " ... our Gracie...

How difficult was the adjustment? Especially for any of you whose

child received the trach later... Where do you draw the line for

their access to common areas in your home.. We don't know if we will

get 8 or 16 hours a day... but we know our respite hours don't

increase (we've never even taken advantage of that!) We both work

(my husband part time and I work full time - and then some!) so our

schedules overlap late in the day three days a week...

We're nervous and hesitant... What if our personalities don't

mesh...? What if Gracie doesn't take to her? What if she does't like

dogs...?! I know it sounds silly, but now that Gracie is doing so

much better, and I are focusing on things such as the fact that

he will no longer be able to hang out in his boxers!

Any advice, lessons, stories (good and bad) would be greatly

appreciated... we are just getting nervous!

Thanks for any advice... thanks for " listening " ...

Kristi

mommy to Gracie, 17 months

wife to

and dog mom to Sophie (who misses Gracie desperately!)

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

September 22, 2004

Here's my short reply......and please excuse my strong opinions if they are

offensive.

My CHARGE'R, , had a trach until she was 8 months old. We had her at

home without nursing care. (Oh how I wished I knew I could have had nursing

care!) Why do you say that you can not have her home without nursing care?

We had the same feeling after the trach as you.....what a beautiful face she

had. We had not seen her face, since birth, without tape on it! And after

her heart repair at 15 months and her lips weren't blue she looked just like

her sister! So beautiful and such a fighter! Regarding the heart post op,

bloating/constipation/gas was one of the worst parts of recovery. I was so

frustrated because the hospital staff wasn't proactive with it and I'm sure

wasn't the first kid to suffer from it! It sounds like it is too late

to be proactive with Grace but try to be aggressive with this

problem.... was miserable! Also, when was weaned off the hard

stuff (narcotics) she had horrible withdrawal...I wish I would have slowed

the doctors down. She didn't need to suffer from withdrawal post op!

For us the trach was scary at first. One of the worst things is that we

were sent home with an apenea monitor. It would alarm and we had no idea

why (it would alarm all night!). We eventually got a pulse ox which was

wonderful because we had information on why it was alarming. 's Trach

page is an awesome website for kids with trachs! The message board is

invaluable! http://www.tracheostomy.com/

I hope this was helpful rather than just a vent session for me. Please let

me know if I can help.

Lori Myers

Wife to Trent, Mom to (7), (4, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral

Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking

with a walker!), and Emma (2 in October)

Dallas, Texas

Help! New Trach... long hospital stay (posting for

therapy!)

>

> Hi to everyone!

> It's been a while since I've posted... but I read all postings and

> continue to be indebted to the advice and wisdom you all provide and

> awed by your strength and the strength of your children.

> Our daugther Gracie (17 months) was admitted to the hospital on

> August 25th for heart surgery - ASD repair and mitral valve repair.

> Since that surgery, Gracie (as, it seems many CHARGErs do... had

> several " surprises " in store) had a pacemaker placed and had a

> tracheostomy.

> The pacemaker was not a huge surprise - it turned out that after the

> initial surgery, her heart just wasn't firing in a perfect rhythm...

> so two weeks ago a permanent pacemaker was inserted. The ASD was

> much larger (so was her heart in general... largest the surgeons had

> seen in someone her age) than they thought, so the repair of that

> hole affected her heart's ability to regulate itself.

> The tracheostomy, however, was not planned... It was done last

> Wednesday after several attempts to take her off of the ventilator.

> Gracie has always had a delicate airway, but had always managed

> well. After the surgery on the 25th, she was extibated the same

> night and went back on the ventilator after approximately 48 hours

> due to her sats dropping and the inability to recover them. The

> following Monday, she was extibated again and this time only went 9

> hours before her CO2 was too high and her breathing too labored. She

> was extibated AGAIN and had bronchoscopy done to check out her

> airway... although very angry looking, it was small and open... 30

> hours later (after fighting through a practically non-existent

> airway) she had another bronch and was re-intibated. So, two weeks

> ago (the same day she had the pacemaker placed), she had laser on her

> upper-airway to try and " shave " down some of the granulation tissue

> and the excess cartilage... The plan was to wait 48 hours and take

> her off the ventilator and see what happened... We ended up waiting 4

> days and she lasted exactly 30 hours again with a CO2 at 90... so,

> last Wednesday she received the trach.

> I cannot explain how inspired I am by her strength and her will to

> survive... when we saw the photos of her airway and realized what she

> had struggled through, we were amazed. Her fight gave us more

> strength... it was fuel for the road ahead. Of course, when she is a

> defiant teenager testing me (which I actually look forward to!), I

> will try very hard not to let her know that I have never been more

> inspired or impressed by anyone's strength as I am hers!

> My husband and I, of course, went through all the ranges of emotion

> that the trach involved... we mourned the fact that it will be a

> while before we can hear her laugh - the sweetest sound ever. That

> our lives, albeit temporarily (the definition of temporary remains to

> be learned) are dramatically changed... But I cannot tell you the

> relief we felt when we saw how comfortable and relaxed she was the

> minute they rolled her out of the O.R. It was the first time we had

> seen her face uncovered in three weeks... No tape, no masks, just her

> beautiful little face!

> So, here we are, one week post-trach and tomorrow it will be changed

> for the first time... We are learning the care... and she is so

> tolerant! She is still on the ventilator (CPAP with pressure

> support) because in addition to all these challenges, she had a

> diaphram issue, a bowel issue, has had horrible withdrawals (she was

> basically sedated for three weeks) and now has an infection... Her

> poor little body is so picked over that they can't get another IV in

> her... So... she's getting antiobiotics through the ventilator and

> will hopefully be put on plain CPAP and eventually just oxygen or a

> mist to go home.

> Now that she's more stable and working on getting over the infection

> and the withdrawals, we are trying to deal with the changes at home...

> It's in this area that I seek advice...

> Nursing care... discharge planning has been working on this since the

> last day she was re-intibated... hopefully we won't have a several

> week wait... but, as you know, we cannot be released without nursing

> care established... And since I can't bring home any of the nurses we

> have come to know and love at the hospital... we will be cautiously

> and nervously allowing a complete stranger into our home...

> It's hard enough when you have a stranger in your home... there with

> all of your personal items and information... but this person will be

> with our most precious and personal " item " ... our Gracie...

> How difficult was the adjustment? Especially for any of you whose

> child received the trach later... Where do you draw the line for

> their access to common areas in your home.. We don't know if we will

> get 8 or 16 hours a day... but we know our respite hours don't

> increase (we've never even taken advantage of that!) We both work

> (my husband part time and I work full time - and then some!) so our

> schedules overlap late in the day three days a week...

> We're nervous and hesitant... What if our personalities don't

> mesh...? What if Gracie doesn't take to her? What if she does't like

> dogs...?! I know it sounds silly, but now that Gracie is doing so

> much better, and I are focusing on things such as the fact that

> he will no longer be able to hang out in his boxers!

> Any advice, lessons, stories (good and bad) would be greatly

> appreciated... we are just getting nervous!

> Thanks for any advice... thanks for " listening " ...

>

> Kristi

> mommy to Gracie, 17 months

> wife to

> and dog mom to Sophie (who misses Gracie desperately!)

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

September 22, 2004

Kristi,

Wow! What an ordeal you've all been through. Sounds like Gracie is a real

fighter. I don't know much about trachs, but at one time the possibility was

mentioned for MacKenzie and when I expressed my dismay I was promptly put in

my place and was told " trachs are lifesavers " , you do what you have to do, I

guess. No advice here, but good luck and I hope Gracie has a great

homecoming.

Jeanie

mom to MacKenzie 6 CHARGE, Tyler 12 & Zachary 10

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

----

September 22, 2004

Our Devon had a trach from three weeks till she was 9 yrs.old,when they

removed it it was the happiest and scariest time,i know everything will turn out

fine . , Devon's Dad 12 yrs.old

September 22, 2004

I have no advice, but wish you well in your search for a nurse and glad she

is doing better.

hugs going your way,

maria mom to timmy 9 ChARGe, keegan6, liam 3 wife to pat