|
|
Post by Deannalee on Jun 16, 2004 13:21:45 GMT -5
Justin finally came home from the hospital...11 days of intubation and on the vent.....4 infections from lack of care....very shellshocked.....and still on O2. He had his tonsils, adenoids, part of his soft palate, and part of his uvula removed due to obstructive airway. ANYWAY, the day of discharge, his pulmonologist mentioned that we were still looking at the possibility of needing a trach due to his weight. Since his J tube replaced his G tube in Feb, his weight has drastically gone up. Probably because he is no longer refluxing his Pediasure!!! He is now 26 lbs at 16 mos. I don't think he looks fat, but the Dr says that he has too much redundant neck tissue which will possibly lead us to the path of a trach. A few weeks ago we did cut his calories by 10%. Does anyone here have any charts regarding the daily calorie requirements of infants/children with DS. I want to make sure we are on track with his calories now....we really don't want a trach if he doesn't need one! I have come up blank with my WWW searches. Thanks in advance.
Deanna mom to Justin (DS) 16 mos
~i~ Jordan (DS) 1/20/03-2/2/03
|
|
|
|
Post by justinsmom on Jun 16, 2004 14:40:48 GMT -5
Don't have any charts but just wanted to say WELCOME HOME JUSTIN!!!!!!!!!!!
|
|
|
|
Post by Emilysmom on Jun 16, 2004 21:54:12 GMT -5
Wish I could help you....but just wanted to say I'm glad Justin is home. Sounds like he has really been through a lot! I'll keep him (and his family) in my thoughts and prayers. Please keep us updated whenever you are able.
Susan
|
|
|
|
Post by laurasnowbird on Jun 16, 2004 23:21:51 GMT -5
Okay, only have a moment here, but I wanted to suggest that perhaps the Down Syndrome Nutrition Handbook by Joan Guthrie Medlen might provide some guidance.
I just sent her a quick e-mail to see if she might be able to shed some light, but I don't know if she's around right now. I'll let you know right away if she has any advice to give.
Sounds like you've had a rough go of it lately. Hugs to you and Justin!
|
|
|
|
Post by MaggiesMom on Jun 16, 2004 23:29:40 GMT -5
There's a good feeding group on Yahoo that could be able to answer your questions. I know I've seen questions like that before.
feeding@yahoogroups.com
There's also a feeding_g-tube@yahoo.com But I'm not 100% on the exact name. You can type feeding and g-tubes in a yahoo groups search and it will find it.
Good luck!
Robin M - Maggie's mom
|
|
|
|
Post by steffipoo on Jun 17, 2004 15:22:04 GMT -5
HI NOT sure about ng tubes at all but wanted to say why don't you have the pulmonoligt refer you to nutrition clinic??? I'd go for that. My girl was and always has been a GIANT child. She was 18 pounds at 7 months and a BIG GIANT ROLL kid. I just wanna warn you of the dangers of being overweight my girl has had lots of problems. Just whatever you do when you start feeding thru mouth just make sure that he eats healthy!!! My girl had high insulin and much harder time breathing before her low carb low fat diet so good luck!!! STEFF
|
|
jackie
&
Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
