Re: (unknown)

July 13, 2005

Wow, I am 2 days behind on checking e-mail so I am sure you have gotten lots

of input by now. How long from Rhode Island to Boston? Would she have to

have a feeding in route? Would they discharge her to parents if parents

were to drive her directly to Boston Children's and then she were to be

admitted there?

As far as Boston or Baltimore, I would have no problem with Boston!

Then finally the enjoy her while you can comment, Oh my God! That is

ridiculous. From what you have said igh does not have anything that

would threaten her life expectancy at this time. You will sort out the

insurance mess, you will get to people that know CHARGE, the aspiration and

reflux will be taken care of, and you will be amazed at how she will thrive

and be such a joy to you all.

Oh yes, and the couldn't break the news to you piece - It is exasperating

when professionals try to protect us from " reality " . Hate to break it to

them, but we live reality. We can see the differences, we know something is

up. Not telling us the word, does not help us. Without knowing what it is,

how can we find information or other people to help us help our children and

to help our selves cope.

I am glad you have found the list, and hope that since it has been 2 days

you are well on your way to Boston.

KIm

> Kim,

> I gave the mesage you sent. He asked me to respond to you because he

> is at the hospital with igh. igh does have a heart defect (3 holes),

> choanal atresia and moderate reflux. They did do the kidney test(showed

> swelling in one kidney) echo (clean), mri(clean), and swallowing (has severe

> difficulty, swallows into her lungs). We believe that the g-tube needs to be

> done, however, by whom? To answer your question Balitmore is opposed to RI

> doing the g-tube because of 2 & 3. They do not trust the doctors in RI and

> they want a more complete workup. RI doctor already admitted to having little

> to no experience with CHARGE. Josh and Jen(igh's mom) Do not feel

> comfortable with having them do it. My opinion is to bring her to Boston,

> based upon the info people have sent about their experiences there. I think

> that if Boston and Hopkins are comprable, keep her close to home. It

> would be good for the family as well as igh. Not to sure Josh would

> agree. He is

> under the impression that Baltimore is the place for her.

> They have not had any classes for taking care of igh. Not sure if you are

> aware, every 30 days Women & Infants' has a doctor change. It wasn't until

> the change (two weeks after igh was born) that they told Josh that she had

> CHARGE. " New " dr. told Josh that other one knew but did not know how to

> " break the news " to him! Information he had given Josh was false and new

> shift dr. gave appropriate info. Needless to say, our family is not

> comfortable with igh being there. They said there is nothing they can do

> to " cure " her condition. They want to do the g-tube and send her home. They

> told Josh to " spend as much time with her while you can. " Not to optomistic.

> Anyway, the decision now is Baltimore or Boston. We will figure out the

> medical after that.

> Same question here about the stability. They said after g-tube she can go

> home. When asked about the flight to Blatimore they said she needs medical

> assistance on flight. But if driving there, non required! WHAT?? Does not

> make sense to us either. That is why we all agree that she needs to be

> anywhere but where she is.

> Thanks for listening and helping!

> Christene (igh's aunt)

>

> Kim Lauger wrote:

> ,

>

> When they say there is nothing they can do, what do they mean by that? That

> they do not know how to take care of your daughter or that if you don't put

> in a g-tube there is nothing they can do?

>

> If there are no immediate life threatening medical situations, such as heart

> defects or choanal atresia, they may be thinking that knowing she has CHARGE

> is enough. Are they up to date on the current diagnostic criteria. While

> she is there I would do a total work up to make sure nothing is missed.

>

> If a g-tube needs done, are you comfortable with the doctors in RI?

> Do you have more questions about the pros and cons of g-tubes and about

> severe reflux?

>

> As far as handling the insurance, it seems she needs to get stable enough to

> be discharged, the two of you taught to manage the suctioning etc if needed,

> and then you get her to Baltimore. I am still confused about why Baltimore

> was so opposed to having the g-tube done? Is it because they 1) oppose the

> g-tube, 2) don't trust the doctors in RI and want to do it them selves or 3)

> they want to do a more complete diagnostic work up before any surgeries are

> done.

>

> If the hospital there has not done scans of kidneys, the temporal lobe, an

> echocardiogram, a video swallowing studio, and UGI or other such tests, it

> seems that would determine the medical necessity of being transported.

>

> If she is stable enough to go home, why does she need the nurses with her in

> transport? Have they done any parent education yet?

>

> It sounds like you all have an awful lot to cope with and questions to ask

> to help with your decisions.

>

> To reassure you, my son Dylan started with n/g feedings at 2 weeks, had his

> g-tube put in at 7 weeks along with a fundoplication for the reflux, which

> made an incredible difference in his ability to have appropriate growth

> which has such a big difference on development. The g-tube has worked well

> for us. Other families decide they will do just about anything to avoid it

> - it is a highly individual decision, based on the child's health concerns

> and the parent's beliefs.

>

> Good luck to you.

>

> Kim Lauger

>

>> hello, my name is joshua gomes im writing from prov. r.i. my daughter was

>> born

>> on june 14, 2005 she was diagnosed with charge. the hospital where we live is

>> telling us that there is not much they can do for us, they want us to let her

>> get a g-tube and send her home.we whould like to get her transferred to john

>> hopkins in maryland, but our insurance will not cover her stay there. so

>> please if anyone has any info that could help please e- mail me.

>>

>> thank

>> you

>>

>> joshua gomes

>>

>> ---------------------------------

>> Sell on Yahoo! Auctions - No fees. Bid on great items.

>>

July 14, 2005

Martha,

Don't you hate it when they both worry you so bad at the same time?

Kim

> To all but with a head's up to Pam and Laurie:

> We do 's " adult plan " or whatever it's called on the 19th. This is

> somewhat complicated since she is 3 1/2 hrs away from Springfield and

> our local coordinator has requested that we do this via conference call

> from here; I don't know why. Does anyone know what we can expect? I

> know (oh, Bonnie, I DO know) that the protections under IDEA no longer

> apply, but I'm just not sure what we can put in.

> Bonnie, your post answered some things, but what about just needing

> to go on outings (Pam, remember you wanted to know if she could have a

> pedicure), expanding expectations if we can somehow point out 's

> higher functioning level when not so dosed on meds. Sue suggested

> using the Perkins' portfolio precisely to demonstrate this sort of thing.

> Pam, I heard from Sue today (for those not in on Perkins, Sue is the

> transition person), and she talked about jobs, having in writing a

> schedule, etc.. My fear is that when has a bad day, they'll drop

> everything forever. Mind you, last night I had a delightful instant email

> experience with a house staff who reported that is already signing

> that she (i.e., K. is a rat). Andy and I were thrilled.

> I'm rambling and have scads to do before gets in tomorrow. I

> doubt that anyone of you has seen a house get in this shape! Moreover,

> E. has once again scared us silly. She and boyfriend went mountain

> biking, and E. took a serious fall. Nothing broken but the dr. in the tiny

> town told her to use a file to get the rocks out of her hand, this after

> rubbing very hard with alcohol (sp?) as the only disinfectant. Luckily, she

> then visited the host family she'd stayed with while teaching, and they

> promptly took her to a good dr. She's on pain killers and antibiotics

> because of pus! She truly liked the dr, who asked if she would use

> " weed " as a pain killer. Talk about open communication between parents

> and offspring.

> Ok, I just needed to write about E. Her hand is red and swollen, but

> she's home tomorrow and will go to a local dr. Thanks for listening to this

> aside.

> Again, any advice about writing an adult service plan is desperately

> needed.

> Thanks --- Martha

>

> From what E. has reported (cannot button her pants, cut her meat, drive,

> etc.), I think it's almost impossible that I'll be in Miami. When she

> arrives,

> I'll know more.

>

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

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 7th International

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

> Information will be available at www.chargesyndrome.org or by calling

> 1-.

>

July 14, 2005

And oh yes, I hope is journaling her adventures in some way.

Let's see I am sure she has had fabulous adventures, but then the

misadventures too; the car jacking, the jellyfish, the bike wreck and the

advice of the doctor..... Telling the stories later (once you know she is

fine) and laughing about it, helps diffuse some of the anxiety - sharing

Tyler escapades with my friend Barb and laughing is the only way I survive

my Tyler's adventures.

And as young and agile as E's mind is now, she will not remember even a

fraction of it later years unless she writes it down.