Re: Whitney and tracheotomy

[Guest guest]

hope all goes well, no experience with this here, hugs going your way.

maria

Whitney and tracheotomy

>

> Well, after 15 months of Whitney struggling to breath, she finally ended

up

> getting a tracheotomy yesterday. I know it will really help her in so

many

> ways. I'm really nervous about handling the care and nurses. Yesterday,

I

> started out her day with her usually bath. She had her first seizure and

> stopped breathing. We are lucky that she didn't die. I guess with all

of the

> scar tissue caused by many intebations, combined with her small and

floppy

> airway, it just started closing completely on its own. I'm hoping for

words of

> encouragement as I haven't seen many posts saying, " it's not that bad "

type of

> comments. Thanks, DeAnn Wells wife to Jeff, Mom to Austin 9,

6,

> Whitney CHARgE 15 months

>

>

>

[Guest guest]

DeAnn,

Life with CHARGE is truly not that bad. It seems we have all been

processing grief over the last week, which it is important to let those

feelings out. But there are also so many things that make our lives

wonderful, that we would never experience without the gift of our children.

I am so glad you were with Whitney when she stopped breathing. How

frightening for you. Getting used to a trach takes awhile, but once you

have done it awhile you will realize that yes, I can do this. There will be

parts of your life that will be easier because of the trach, and parts that

will be more difficult, but they will balance out and you will find your

routine in all of it.

I am so glad Whitney is okay, trach and all.

Kim L

Whitney and tracheotomy

Well, after 15 months of Whitney struggling to breath, she finally ended up

getting a tracheotomy yesterday. I know it will really help her in so many

ways. I'm really nervous about handling the care and nurses. Yesterday, I

started out her day with her usually bath. She had her first seizure and

stopped breathing. We are lucky that she didn't die. I guess with all of

the

scar tissue caused by many intebations, combined with her small and floppy

airway, it just started closing completely on its own. I'm hoping for

words of

encouragement as I haven't seen many posts saying, " it's not that bad " type

of

comments. Thanks, DeAnn Wells wife to Jeff, Mom to Austin 9, 6,

Whitney CHARgE 15 months

[Guest guest]

It is true that some things are more difficult and some things are made easier

with the trach. You will become a pro at taking care of it and before you know

it, you will be better at it than the nurses. If you have any questions, please

feel free to ask. My son has been trached since he was 5 days old and he

is 5 years old now. Take all the help you can get!!

Bernie - Mom of cHARGEr 5, Amber 8

wellsjdan@... wrote:

Well, after 15 months of Whitney struggling to breath, she finally ended up

getting a tracheotomy yesterday. I know it will really help her in so many

ways. I'm really nervous about handling the care and nurses. Yesterday, I

started out her day with her usually bath. She had her first seizure and

stopped breathing. We are lucky that she didn't die. I guess with all of the

scar tissue caused by many intebations, combined with her small and floppy

airway, it just started closing completely on its own. I'm hoping for words of

encouragement as I haven't seen many posts saying, " it's not that bad " type of

comments. Thanks, DeAnn Wells wife to Jeff, Mom to Austin 9, 6,

Whitney CHARgE 15 months

[Guest guest]

DeAnn-

Aubrie did not have breathing problems, but she was a sick baby. Her

issues were not life threatening, but they were scary and overwhelming

since they were the worst I'd ever had to face. I can't speak to your

issues specifically, but I can say, as the others have, that you will

become expert at all of these things that you are afraid of now. You

will find skill in managing a team of nurses in your home. You will

find energy to love Whitney as a baby instead of always having to think

of the medical stuff first. I know things seem overwhelming now - -and,

indeed, they are very challenging to say the least -- but it will get

better. Many others have started in the same place you are now and come

out on the other side to a joyous family with a new definition of

" normal " . When you are weary of it, know that there is something better

down the road -- you just can't see it yet. Trust that it's coming and

do what you need to to nurture you and family through each day.

Hugs-

Michele W

Aubrie's mom 6 yrs and 13 yrs wife to DJ

wellsjdan@... wrote:

> Well, after 15 months of Whitney struggling to breath, she finally

> ended up

> getting a tracheotomy yesterday. I know it will really help her in so

> many

> ways. I'm really nervous about handling the care and nurses.

> Yesterday, I

> started out her day with her usually bath. She had her first seizure

> and

> stopped breathing. We are lucky that she didn't die. I guess with

> all of the

> scar tissue caused by many intebations, combined with her small and

> floppy

> airway, it just started closing completely on its own. I'm hoping

> for words of

> encouragement as I haven't seen many posts saying, " it's not that

> bad " type of

> comments. Thanks, DeAnn Wells wife to Jeff, Mom to Austin 9,

> 6,

> Whitney CHARgE 15 months

>

>

>

[Guest guest]

I hope this goes well.

Kay

Whitney and tracheotomy

>

> Well, after 15 months of Whitney struggling to breath, she finally ended

> up

> getting a tracheotomy yesterday. I know it will really help her in so

> many

> ways. I'm really nervous about handling the care and nurses. Yesterday,

> I

> started out her day with her usually bath. She had her first seizure and

> stopped breathing. We are lucky that she didn't die. I guess with all

> of the

> scar tissue caused by many intebations, combined with her small and

> floppy

> airway, it just started closing completely on its own. I'm hoping for

> words of

> encouragement as I haven't seen many posts saying, " it's not that bad "

> type of

> comments. Thanks, DeAnn Wells wife to Jeff, Mom to Austin 9,

> 6,

> Whitney CHARgE 15 months

>

>

>

[Guest guest]

Deeann, I have wondered how Whitney was doing- I remember reading

she was being taken to the emergency room several weeks ago. I can

only imagine how overwhelming a trach must be to learn about &

accept. When the dust settles I'm sure you'll look back and find

youve amazed yourself with all you can do... look at how much you've

learned and done already. Hang in there!

Hugs,

Mark

> Well, after 15 months of Whitney struggling to breath, she finally

ended up

> getting a tracheotomy yesterday. I know it will really help her

in so many

> ways. I'm really nervous about handling the care and nurses.

Yesterday, I

> started out her day with her usually bath. She had her first

seizure and

> stopped breathing. We are lucky that she didn't die. I guess

with all of the

> scar tissue caused by many intebations, combined with her small

and floppy

> airway, it just started closing completely on its own. I'm

hoping for words of

> encouragement as I haven't seen many posts saying, " it's not that

bad " type of

> comments. Thanks, DeAnn Wells wife to Jeff, Mom to Austin 9,

6,

> Whitney CHARgE 15 months

>

>

>

[Guest guest]

Deann,

I have not dealt with a trach so I have no words of encouragement except to

say that sometimes things end up easier than it seemed when you started out. I

hope this is true for you. Please know our hearts are with you.

Wishing you all the best.

Bonnie, Mom to a 22, Patty CHARGE 20 and wife to

[Guest guest]

Hi DeAnn -

I am so sorry for you, Whitney and your family. I know this has been a

difficult time... I am sure you will get lots of input from all the wonderful

people on this list.

I don't know how much you have been able to read during the last several

weeks... but we (our baby girls) are just a few weeks apart medically.

Gracelyn

was admitted August 25th for scheduled heart surgery and just came home

November 2. (Haven't had a chance to post to announce her homecoming!) I can't

say that I know exactly how you feel because we all process things

differently, however, I am definitely in the thick of the " rawness " of the

nursing,

trach and all that comes with it...

We have had our challenges and I am sure that will continue until this

becomes " normal. " What I struggled with was that I didn't want this to be

normal... but it's certainly better than seeing Gracie struggle to breathe.

Gracie

was trached on September 15 - - Just two months before Whitney. While I

can't offer you the perspective of the parents who have " been there, done that "

(so to speak) I can tell you that just two months post-surgery, we are ALL

doing much better than we were two months ago. Not without stress and fatigue,

of course, but Gracie is home, happy and as healthy as can be expected.

Nursing is an individual experience - - (personalities, skill, knowledge). I

actually posted re: home care (and the many concerns) myself and got a great

amount of advice and experiences.

I would love to email with you privately or talk on the phone... there is so

much to talk about and talk out. So... I am here... and please feel free to

email me off the list - - I will give you my number and we can chat when and

if you are ready.

If I remember correctly, you are in So. California... We are in No.

California... with family down south... perhaps, when the season is a healthier

one,

we can get our families together.

Wishing you strength and perseverance,

Wishing Whitney health and quick healing.

Kristi Swann

mommy to Gracie, 19 months

wife to