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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
06-02-2005, 12:40 PM
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Congratulations on his homecoming! It will be a wonderful but scary time for you all as a family, I'm sure. The docs feel they have to paint as black a picture as possible so that you don't get your hopes up only for them to be dashed. They tend not to talk in absolutes because they KNOW that they don't KNOW if you see what I mean. We had the opposite problem - "Oh, he has a heart defect, but it shouldn't need surgery until he's a year old..." (He went into acute heart failure at 4 weeks old)....."The surgery should fix it...." long and fruitless recovery and now he's oxygen and vent dependent and has been since his 2nd open heart op - so, sometimes it's better to expect the worst only to have things turn out OK.
I'm so happy for you all, and I hope that Amare goes from strength to strength. His parents will probably cope better than some of us older ones because you don't tend to dwell so much on all the stuff that can go wrong at that age. Tend to be more forward thinking - it will stand them in good stead. Love, Kate
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Kate, Mum to: Angus 27/6/04-24/11/10 My star of a boy who was vent and O2 dependent 24/7. One of the loveliest kids you could ever have met. Pics and vids Blog Juliet 28/9/99 perfectly healthy and beautiful Alasdair 28/9/10 Delightful, easy-going boy I'm a 'dawk'  
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#2
06-02-2005, 08:48 PM
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Congratualtions! I can't add anything to what was said by Val and Alethia. Enjoy the homecoming!
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Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007.  B & C are surviving triplets. Brooke survived for 1 month.
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#3
06-03-2005, 10:15 AM
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Congratuations on the homecoming. Amare picked the right family to bless with his presence. My son was pretty much the same, CPAP with no Oxygen.
Good job on the feeds..keeping that boy fat and happy can do nothing but good for him. Welcome to our happy community
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Leslie, mother to Chris (12), Chase (3) and Chad (2) I have 3 boys cause I didn't want 4. Chase- X 31 weeker, Trachea Esophageal Fistula, Esophageal Atresia, Pyloric Stenosis, VSD, Pulmonary Stenosis, Severe malacia (90% occlusion)..one failed decann attempt
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#4
06-03-2005, 10:51 AM
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"The docs looked at us after they did the biopsy and told us he would probably never be able to feed himself, walk, or run..."
I'll never understand why doctors make such predictions when there is no way to know for certain how this child will do. No wonder they are proven wrong so many times. And the last thing they should want to do is take away hope at this difficult time. Even if they turn out to be correct, a child with a disability has so many wonderful gifts to give. But this is a lesson better learned over the long run. Best of luck to little Amare.
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Cindy - Mom to Aaron (age 19), trached for 4 years, subglottic stenosis, ADHD, learning disability, former 26 week preemie and identical twin to Eric (age 19), spastic quad CP, moderate MR, seizure disorder; Anthony (age 19), spastic quad CP, g-tube, seizure disorder, cortical vision impairment, profound MR; and Natasha (age 6) CP, cortical blindness, seizure disorder, profound MR, shunt, g-tube.  Home Page: http://www.bissells.com
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