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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
05-31-2002, 07:26 PM
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Hi everyone! I have a 5 year old son. His name is Drew. He was diagnosed with a chromosone deletion. The doctors blame all other disabilities on the chromosome deletion q36. He has a seizure disorder, cerebral palsy, cortical blindness,hypothyroidism,gastroesophogeal reflux. Since we trached him on Sept. of 1999 we have ventured into more problems. He has been in the hospital several times for pseudomonas aeuruginosa pneumonia. This is a bacteria that is very, very hard to kill with antibiotics. He was also diagnosed with bronchomalacia and has damage in upper right lobe. We are in the hospital monthly since Nov. of 2001. BUT are last discharge date was April 18,2002. Yes, it's been 42 days out of the hospital!!!! Drew also has an implanted port catheter (central line). He needs this for I.V. antibiotics. I'm glad i'm not alone! Sometimes I feel like I'm the only one out here that has a sick child! Hope to here from everyone! My praye4rs are with everyone.
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#2
05-31-2002, 10:10 PM
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Hi and welcome to the board. The support here is great in my opinion!!!!! I hope you find what you need here!!! 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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#3
05-31-2002, 11:04 PM
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WELCOME!!!
I am so glad that you found this site. The people hear are wonderful. I am so happy to hear that Drew has been out of the hospital for 42 days. I will keep my fingers crossed in hopes for many more days. 
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#4
06-01-2002, 01:09 AM
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Hi!
Welcome to the board! Â*Be careful, or you will get addicted to checking messages every day, like a lot of us, I think! Â* My daughter Lily also has a chromosome disorder (partial trisomy 7q) and has had her trach since she was 4 weeks old. Â*When she was born, they gave us a pretty bleak picture of how she was going to do, but she just turned one year old last week and she's doing her best to prove them all wrong. Â*I know how you feel about feeling like you're the only one in the world with a sick child. Â*I hope this board makes you feel a little less alone. Â* Wishing lots more good days for Drew! Erica (Lily's Mom) Â*
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 Our fabulous Lily was born 5-26-01 with partial trisomy 7q, Pierre-Robin sequence, VSD, GER; had trach, GT, Nissen at 4 weeks, cleft palate repair at 6 months and 18 months. Decannulated 11-15-04. Proud big sister to Benjamin 10-10-03, baby Vivienne 3-5-07!
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