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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
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#1
04-18-2002, 04:13 PM
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Hi
It has been a few days since I have posted....... Angel has BEAT CF again!! She turned 24 today  Angel has a cold and has been coughing up blood.......So here we are another set back!! Angel is back on the Vent day in and day out,,,  Not a great way to spend her B-day..... I put our house up For Sale........... So I can pay for Angels Vent,,,,,,,, B
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*Husband to Angel who is 24 Cystic Fibrosis, Epilepsy, Turners Syndorme, (alot of things rolled into one),CVI, Hearing Impaired,3 Strokes, Brain Injury,G-Tube, Trached and Vent Dept 24/7* *Most People Dream of Angels, I get to Hold One Daily!!* 
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#2
04-19-2002, 10:01 AM
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We live in Canada...
We have no such thing here,,,,, I have even tried to get Angel on Disability....... No luck,,,,,I even took it to Court,,,,,They say she is able to work this is 2 years ago now..... If I could get her on Disability,Everything would be Covered!! But here it is hard to come by unless you know how to play the System.... I know people who are on it and they look as if they can work... Makes me SO MAD!!!!!!!!!!!
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*Husband to Angel who is 24 Cystic Fibrosis, Epilepsy, Turners Syndorme, (alot of things rolled into one),CVI, Hearing Impaired,3 Strokes, Brain Injury,G-Tube, Trached and Vent Dept 24/7* *Most People Dream of Angels, I get to Hold One Daily!!*
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#3
04-19-2002, 10:10 PM
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I am so tired of fighting for things......
I know that sounds crazy,,,,,But I am worn rite down to the ground!! Angel has been vomiting so much today,Seems like I cant keep up any more..... She always did call me old.......I really feel it today....... I sure wish I had people in real life I could talk to,,,,As you know the going gets tought,,,,,All your friends WALK,,,,,,,We do have one set,They are a God send!! They also have 2 children and he works out of town all week,,,,, Does life get better? Will Angel ever come home? Will we ever see life without a Vent and Trach? Sorry I am just so down B
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*Husband to Angel who is 24 Cystic Fibrosis, Epilepsy, Turners Syndorme, (alot of things rolled into one),CVI, Hearing Impaired,3 Strokes, Brain Injury,G-Tube, Trached and Vent Dept 24/7* *Most People Dream of Angels, I get to Hold One Daily!!*
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#4
04-19-2002, 10:49 PM
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I think it is perfectly normal to get down and I don't think there is a person on this board that would say other wise. You learn to live minute to minute, then hour to hour, then day to day. Sometimes you have to look short term instead of long term. Deal with this moment. When I start getting to far ahead of myself I just slow myself down and say lets get through this day first. Don't get me wrong there are always things you have to look at farther into the future, But pick your subject wisely. My mom always tells me "chose your battles wisely" in reference to my 12 year old daughter but I think the same thought applies to everything in life. I use to have pity parties at least once a week when I first had Celia, it's such a huge adjustment in life, but now that she is 4 I rarely do. It just becomes a way of life. I'm sorry you are feeling down, just don't drownd in it, it will get better!!!!!!!! Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Gretchen
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 http://mamazgirlz.blogspot.com/ Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
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#5
04-22-2002, 01:12 PM
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How barbaric can your system get? I agree with the others. Go public. Your story is so sad it makes me wish I could do something for you. We live in the U.K. and our system, although not perfect, would not make you homeless. We pay for our health service through our taxes and therefore do not have to pay for medical treament when required. My heart goes out to you. Does your local radio station have an email address that you could send your story to. The same with the local and national press? Fighting a battle like this is hard, but this could be a start. Our local general hospital received from bad publicity last week from the mother of a two year old with a trachy. She simply told the local press how the hospital couldn't handle a child with a trachy. Go get them! Olga
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Mum to Grace age 8 1/2. Subglottic haemangioma. Decannulated 19/12/03 after being trached for 3 years & 3 months.
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