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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
04-22-2002, 06:44 PM
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Hi...I'm new to this site. I have never joined anything like this before. I hope I'm doing it right. My son, Mike, got his trach last July. He has venous malformations in and around his airway. He also has CP that affects his legs. He uses a walker and a wheelchair. He goes into the hospital every 8 weeks for schlerotherapy treatments on his veins. We just got back from the hospital on Friday. I'd love to talk to other people about trach care and everything else we have to deal with daily.
I have two other children Angela is 16 and Marissa is 14. My husband is Tony and he is great. He helps out with caring for Michael as much as he can, but he works alot. We have home nursing but only for 8 hours a week. It helps, but not all that much. I think I'm running out of room. Bye for now... 
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#2
04-22-2002, 07:14 PM
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Hello and welcome. You have come to a great place for trach parents. If you have any questions about trachs or doctors, all you have to do is post it and somebody always knows the answer. I find this place a great comfort. It really helps to know there are others out there going through the same things.
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#3
04-23-2002, 02:00 PM
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Hello
Glad you found us. This is a great board to belong to. It's been a great help knowing there are other people who understand our daily struggles and who can appreciate our successes. Take care Anne, mom to Jimmy ( 2 1/2) GBS, trach, vent dependent, g-tube
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Anne, mom to Jimmy (9) Infantile Axonal Poly Neuropathy, trach, vent dependent, g-tube, scoliosis and spinal fusion with growth rods
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#4
04-27-2002, 07:25 PM
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Thanks everyone for the great welcome! I've heard many people talk about using different things for trach ties. I have only used the Dale ties that I was introduced to in the hospital. Could you give me some other ideas?
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#5
05-31-2002, 10:13 PM
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Hi, I am gald you found this site!!! When I came on here I had never been on a board before but saw that the people on here were very helpful. I hope you find the same. Welcome.
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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#6
05-31-2002, 10:58 PM
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WELCOME!!!!
Just want you to know that we are glad to have a new member and feel free to ask any question that you have or just to vent or fill us in. I too never joined anything before this and I have to say, thanks to everyone on this site they have helped me through some really difficult times.
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