Zak's back in the hospital

[Guest guest]

Hi all,

Just wanted to drop a line to let you all know that " surprise, surprise " Zak

is in the hospital again. We took him in on Thursday and they think it's RSV

(yep, even in the summer). Zak is with RSV as Tryny is with pneumonia (they

both never get a cold, nothing that easy). Tryny always gets pneumonia and

Zak always gets RSV. So we wait it out to see when we can bring him back

home.

Another thing I found out while up there with Zak today, Indy has another new

CHARGEr. This baby is 8 days old and the parents are scared to death. They

are being bombarded with doctors and all their " medical " talk, and papers

that are too hard to read and understand. So one of Zak's nurses from the

ICU talked to them and told them that if they ever wanted to speak to another

parent of a CHARGEr, of 2 CHARGEr's in fact, they knew of someone (me).

Zak's nurse told them that I had two of the most severe cases they had taken

care of, so I could probably answer any questions and give honest and true

advise. I talked to the mother (Suzette) today for a little bit and she is

truly scared out of her wits. Her baby is blind (has no eyes at all) and is

on a vent. The doc's prognosis isn't very good on the mental status and they

have told the parents that if they want to keep their baby alive, he would

have to be trached and on a vent, or they could disconnect. They don't want

to make a decision on the information they have as they don't understand most

of it, so she asked if they could sit and talk to me tomorrow and maybe they

could better understand their child and what could be ahead. So I am asking

that all of us keep good thoughts for these parents and their baby. I told

her about our list and will give them the address tomorrow. I know how

important all of you are to me and my boys, hopefully they will contact us

and share in our strength.

Debra

[Guest guest]

Debra,

Sorry to hear Zak's battling that old RSV again, you think you'd get a break in the summer! Hope he's back home again really soon.

I'm glad the nurses hooked you up with the new mom, it'll be good for her to meet/talk to you and see that anything is possible. I feel so bad for the new parents, especially when you don't understand most of what is being said and you're too shell-shocked or shy to push the docs to explain things better to you. Give them our best...

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Zak's back in the hospital

Hi all,Just wanted to drop a line to let you all know that "surprise, surprise" Zak is in the hospital again. We took him in on Thursday and they think it's RSV (yep, even in the summer). Zak is with RSV as Tryny is with pneumonia (they both never get a cold, nothing that easy). Tryny always gets pneumonia and Zak always gets RSV. So we wait it out to see when we can bring him back home.Another thing I found out while up there with Zak today, Indy has another new CHARGEr. This baby is 8 days old and the parents are scared to death. They are being bombarded with doctors and all their "medical" talk, and papers that are too hard to read and understand. So one of Zak's nurses from the ICU talked to them and told them that if they ever wanted to speak to another parent of a CHARGEr, of 2 CHARGEr's in fact, they knew of someone (me). Zak's nurse told them that I had two of the most severe cases they had taken care of, so I could probably answer any questions and give honest and true advise. I talked to the mother (Suzette) today for a little bit and she is truly scared out of her wits. Her baby is blind (has no eyes at all) and is on a vent. The doc's prognosis isn't very good on the mental status and they have told the parents that if they want to keep their baby alive, he would have to be trached and on a vent, or they could disconnect. They don't want to make a decision on the information they have as they don't understand most of it, so she asked if they could sit and talk to me tomorrow and maybe they could better understand their child and what could be ahead. So I am asking that all of us keep good thoughts for these parents and their baby. I told her about our list and will give them the address tomorrow. I know how important all of you are to me and my boys, hopefully they will contact us and share in our strength.DebraFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org