Re: Hospital Sites - WELCOME & Trinity

[Guest guest]

Hi !! I actually have been in Kennedy's site a few times as has my mother.

Actually, my mom was the one that found her site and told me about it. I sent

Kennedy a note back in Feb or Mar, I think, just stating how wonderful I thought

her site was. She really is an inspirational little girl. I've been enjoying

her videos.

I have done so much reading up on things that go on with CHARGE children and

the repeat surgeries that we want to be sure we get a good ENT that is familiar

with CHARGE. Reason I'm looking for hospital rankings is to add fuel to our

fight with the military and where they want to put us. They will move us and we

requested to be closer to family and a hospital that can support Trinity's needs

should an emergency arise or anything else. Currently we are 5 hours away from

a very good hospital in Birmingham, AL and they have treated her throughout most

of this and they are the ones that diagnosed her. My husband and I are both

from the NW so we would like to get back in the general vacinity of " home "

knowing that we may not get the base of our choice but anywhere would be closer

than 2,800 miles away from them. Our families have been wonderful contacting

us via email and phone but that can only go so far. Trinity has been so scary

for us at times, especially at night.

It's really not like that anymore thank goodness but in the beginning when we

first brought her home we both got virtually no sleep. She was breathing so

loudly and to watch her breath was torture. But the hospital had assured us she

was breathing out her nose just fine. Six weeks or so later we're being told

that her nose closed almost completely up again. We had thought she was having

allergies or something so with much contact with her ENT we put her on a

decongestant for that, which did no good. She not only got diagnosed with a new

closure but she also had a rip roaring ear infection that she literally was

bleeding out of one of her ears. She had had ear tubes put in during one of her

nose surgeries so we weren't sure what the heck was going on. I had already

started treatment on her ears before her doctor appt for her nose as I had taken

her to the base hospital the doctor barely even looked in there and gave me some

drops for them. Luckily her appt was a few

days after that in which the ENT had to flush her ears and put her on a much

heavier antibiotic for them. This is the kind of stuff we are facing and now

the military wants to put us 200 more miles away from our family rather then

getting us any closer to them. No one seems to understand the importance of

support except those of us that are going through it. Our 22 month old has been

through a lot as well and her well being is of upmost concern to us. She's not

sleeping well, waking up screaming for mommy, that kind of stuff. I know it all

stems from the numerous trips and hotel stays in Birmingham which is the main

reason we need/want to get out of here and be closer so that we can do day trips

not overnight trips. We also feel that the presence of family now and then

would be a good distraction for Gracie (our oldest). She too is a wonderful

little girl full of spunk and smart as a whip.

Thank you for listening.

Weir kawfolks@...> wrote:

,

Welcome and congratulations on the birth of Trinity (what a cool name!).

Repeat nose surgeries are QUITE common with these guys. From what I've read

and seen over the years, some kids only need one surgery for c. atresia

(lucky ones!) and some need multiple. My daughter had 6 of her 18 surgeries

for her nose. It's been the most pain in the butt part of CHARGE for sure

in our case. If you're interested in seeing more about her, you can check

her web site, it has all her surgeries, history,etc there:

http://www.chargesyndrome.info

I don't know about hospital rankings for CHARGE - I've never heard of that

to be honest. I'm in Canada so not much help there. Good luck with

everything and keep asking questions...

--

Weir

Personal Web Site:

http://chargesyndrome.info

The Adventures of Kennedy Blog:

http://chargesyndrome.blogspot.com

Secretary, CHARGE Syndrome Foundation Inc:

http://www.chargesyndrome.org

Email:

lisa@...

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan