22q Deletion Interest Board: Re: confused

[ Post a Response | 22q Deletion Interest Board ]

Re: confused

Posted by Liz on 11/7/2005, 12:28 pm, in reply to "Re: confused"
65.25.17.231

Thanks Debbie,
We woke to find Kristin has the worst hacking cough and running nose. Surgery is in 3 weeks and unless I drive an hour into the peditricians office we were at before we moved, I can't get her seen in the town we now live in before Friday. This is so frustrating. If need be I will just take her into the hospital to get the antibotics. I just have to make sure they understand the need to clear this up so we are not rescheduling the surgery. I am waiting for two offices here in town to call and let me know if they will see her or not. I told them she had the VPI associated with the cleft palate and the C22 issue and that she needed to be seen and treated so surgery is not post poned. Hopefully, they will call soon.
When we go back next Monday to the Genetic Center I am going to have them send us to the cardiologist and at least get a look over considering all that is going on now. I hope I am not out of line for venting, its just frustrating me today.
Thanks for listening all
Blessed Be
--Previous Message--
: Hi.My son already had slight apnea
: before surgery and after it got
: considerably worse. He now uses cpap
: which is continuous positive air
: pressure. He has to wear a full face
: mask as he mouth breaths...it
: delivers what I can only describe as
: a force nine gale into the airway to
: keep it open, it is awful.He is not
: eligible to have his operation taken
: down as we nearly lost him the first
: op and the surgeon(a different one!)
: said he should never have been a
: candidate in the first place. Oxygen
: is only used along with cpap if
: there satuarations drop
: significantly.
: As for cardiac stuff I would urge
: you to get this looked into. My son
: did have open heart at 3 months old
: and despite many years of suspicious
: symptoms they failed to dx a very
: rare arterial thorax/cardiac
: disorder, we had to go the US to get
: that dx!So I would get it thoroughly
: checked before any surgery! I would
: also stress that where your child
: does have cardiac probs/murmurs that
: you discuss the need for antibiotics
: before any surgery as this is
: vitally important.
: Debbie (Scotland)
:
: --Previous Message--
: Hello again its a pleasure to have
: somebody that answers back and it
: makes me feel good to think i may be
: helping in some small way......It is
: vey daunting and although friends
: are sympathetic, they really dont
: understand and secretly they are
: thankful its me and not them!!!!!
: And i have had others that dont want
: my kids around them... But we just
: dont speak to ignorant people!!!
: Any way on a more possitive note how
: old is your eldest? And how did she
: get selected for this it sounds
: really exciting for her!
: I live about 1 hour away from
: Sydney. That is where Connor had his
: Palate Operaion done. CHILDRENS
: HOSPITAL AT WESTMEAD. Will you be
: coming with her? Or is it just a
: student thing?
: Just out of curiosity where do you
: live?
:
: And back to business, definately
: check the heart first and i would
: probably check it out evry time she
: goes in for any surgery, AND TELL
: EVERYBODY that you come into contact
: with, all the doctors. Take your
: reports so they are well aware!!
: I have come across nurses that dont
: even know what VCFS is and its
: frustrating to retell everybody you
: see. In the last operation the
: aneathasist reminded me how lucky we
: were, his first question after
: reading the file was "what
: heart operations has he had"
: Lucky for us none.
: As far as the sleep apnea goes he
: was fine before the operation, they
: did tell me this can happen post
: op!!!! He didnt snore before but now
: will forever!
: Depending on severity he will need a
: c-pap (oxygen machine i think) or
: worst case senario they will have to
: reverse the operation!! But then we
: have no chance of speech, so i am
: anxiously awaiting the sleep tests
: be done!!!
:
: again best wishes with everything, i
: am thinking of you.
: Any more questions just ask away....
:
: melonie
:
:
:
:

Message Thread:

confused - Liz 10/28/2005, 9:49 pm
- Re: confused - amy ma 11/13/2005, 10:00 pm
  - Re: confused - maria 9/23/2006, 11:19 pm
- Re: confused - melonie 10/30/2005, 7:07 am
  - Re: confused - liz 10/31/2005, 9:16 pm
    - Re: confused - melonie 11/3/2005, 12:43 pm
      - Re: confused - liz 11/5/2005, 10:00 am
        
        Re: confused - melonie 11/6/2005, 6:14 am
        
        Re: confused - Debbie 11/7/2005, 3:13 am
        
        Re: confused - Liz 11/7/2005, 12:28 pm
« Back to thread

Post a Response

Your Name:

Your Email:

Subject:

Message:

--Previous Message-- : Thanks Debbie, : We woke to find Kristin has the : worst hacking cough and running : nose. Surgery is in 3 weeks and : unless I drive an hour into the : peditricians office we were at : before we moved, I can't get her : seen in the town we now live in : before Friday. This is so : frustrating. If need be I will just : take her into the hospital to get : the antibotics. I just have to make : sure they understand the need to : clear this up so we are not : rescheduling the surgery. I am : waiting for two offices here in town : to call and let me know if they will : see her or not. I told them she had : the VPI associated with the cleft : palate and the C22 issue and that : she needed to be seen and treated so : surgery is not post poned. : Hopefully, they will call soon. : : When we go back next Monday to the : Genetic Center I am going to have : them send us to the cardiologist and : at least get a look over considering : all that is going on now. I hope I : am not out of line for venting, its : just frustrating me today. : : Thanks for listening all : Blessed Be : : --Previous Message-- : Hi.My son already had slight apnea : before surgery and after it got : considerably worse. He now uses cpap : which is continuous positive air : pressure. He has to wear a full face : mask as he mouth breaths...it : delivers what I can only describe as : a force nine gale into the airway to : keep it open, it is awful.He is not : eligible to have his operation taken : down as we nearly lost him the first : op and the surgeon(a different one!) : said he should never have been a : candidate in the first place. Oxygen : is only used along with cpap if : there satuarations drop : significantly. : As for cardiac stuff I would urge : you to get this looked into. My son : did have open heart at 3 months old : and despite many years of suspicious : symptoms they failed to dx a very : rare arterial thorax/cardiac : disorder, we had to go the US to get : that dx!So I would get it thoroughly : checked before any surgery! I would : also stress that where your child : does have cardiac probs/murmurs that : you discuss the need for antibiotics : before any surgery as this is : vitally important. : Debbie (Scotland) : : --Previous Message-- : Hello again its a pleasure to have : somebody that answers back and it : makes me feel good to think i may be : helping in some small way......It is : vey daunting and although friends : are sympathetic, they really dont : understand and secretly they are : thankful its me and not them!!!!! : And i have had others that dont want : my kids around them... But we just : dont speak to ignorant people!!! : Any way on a more possitive note how : old is your eldest? And how did she : get selected for this it sounds : really exciting for her! : I live about 1 hour away from : Sydney. That is where Connor had his : Palate Operaion done. CHILDRENS : HOSPITAL AT WESTMEAD. Will you be : coming with her? Or is it just a : student thing? : Just out of curiosity where do you : live? : : And back to business, definately : check the heart first and i would : probably check it out evry time she : goes in for any surgery, AND TELL : EVERYBODY that you come into contact : with, all the doctors. Take your : reports so they are well aware!! : I have come across nurses that dont : even know what VCFS is and its : frustrating to retell everybody you : see. In the last operation the : aneathasist reminded me how lucky we : were, his first question after : reading the file was "what : heart operations has he had" : Lucky for us none. : As far as the sleep apnea goes he : was fine before the operation, they : did tell me this can happen post : op!!!! He didnt snore before but now : will forever! : Depending on severity he will need a : c-pap (oxygen machine i think) or : worst case senario they will have to : reverse the operation!! But then we : have no chance of speech, so i am : anxiously awaiting the sleep tests : be done!!! : : again best wishes with everything, i : am thinking of you. : Any more questions just ask away.... : : melonie : : : : : :

Optional Image URL:

Optional Link Title:
Optional Link URL:

Notify me by email of all message replies.

Please enter the numbers above. This helps stop spam.

By posting, you confirm that you have read and agreed to be bound by the board's usage terms.

Hosted for FREE by Boardhost.
Create your own free message board!