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Post by momofrussell on Feb 7, 2009 9:29:07 GMT -5
Kerri, I am glad he may be off the vent soon!!! Please keep us posted on his progress!!!!
A.
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Post by kerri on Feb 10, 2009 4:56:53 GMT -5
We're going home!!! Yosh is being discharged in the morning. This has been the longest week of our lives and I really appreciate all your prayers and good wishes.
Does anyone have experience with a g-tube? They put one in during surgery as a precaution in case gas builds up in his stomach that he can't burp out but now we have to use it for feeding because Yosh doesn't feel well enough to eat by mouth. This is hopefully temporary, but I was wondering if any of you have dealt with a g-tube in school. I know some of the kids get nursing services in school for things like seizures and diabetes but this would mean an emergency change his IEP.
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Post by Deannalee on Feb 11, 2009 11:48:59 GMT -5
Wow...I missed a lot. I haven't been on til today. My son, Justin, has a Mickey G/J tube. He has had this for many years now. He is 6 and has gone to preschool only. He is on 13 hours continuous feeds through the night and first part of the day. He is usually done with feeds by afternoon preschool, but if he isn't, I usually hang around and flush him and disconnect him. Only once did I have the school nurse do it. He has not started kindergarten yet, but I believe the school nurse can do meds in the feeding tubes, bolus feeds, and also disconnect the feeds. I hope this helps. So glad to hear he finally came off the vent and go home. I truly understand that feeling having been in a similar scary situation. Many hugs to you.
Deanna
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Post by laurasnowbird on Feb 12, 2009 20:03:15 GMT -5
I'm glad that you're getting to go home. I don't have any experience with a g-tube, but have a friend whose typical child has one. She is a SUPER helpful gal, so if you want me to hook you up with her, let me know. She'd be happy to share what she knows, and she has managed to keep her daughter infection free for nearly three years, which is quite an accomplishment.
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Post by momofrussell on Feb 12, 2009 21:02:29 GMT -5
YEAH!! So glad Yosh is coming home!!!!!! Don't have any experience with the G Tube but I am sure between the home and school you'll get it all going!
A.
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Post by char on Feb 13, 2009 1:16:41 GMT -5
Sorry I'm late but prayers for all coming from Tucson.
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Post by mollysmomma on Feb 15, 2009 16:25:20 GMT -5
oh man...you had ours too, girl! scary stuff!
Molly had an allergic reaction to penicillin a few weeks ago, and it WAS SCARY!! I missed the Queen of Skunk BIG TIME! It took us a week to resolve it!
Enjoy having him home, and spoiling him rotten...I hope he's back up to moving and mischief IN A HURRY!!
e & molly kate
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Post by CC on Feb 17, 2009 21:53:04 GMT -5
"We're going home!!! Yosh is being discharged in the morning."
;D ;D ;D ;D ;D ;D
CC ~
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Post by sd112170 on Feb 18, 2009 20:57:20 GMT -5
YEAH!!!! Great News!!
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Post by Googsmom aka Jennifer on Feb 18, 2009 23:30:56 GMT -5
How is everything Kerri? Hope all is well!!
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Post by kerri on Feb 19, 2009 18:38:47 GMT -5
Yosh is doing pretty well. He's back in school and almost back to his old self. And he's drinking pediasure on his own so the g-tube comes out Tues. This has been his toughest recovery. DH and I can't understand how a simple surgery ended up with Yosh being sedated for 4 days with a tube down his throat. The PICU drs insisted that Yosh had respiratory problems before the surgery, but he's never had more than the occasional cold. We think he got an infection during the surgery. It amazes and infuriates me how often doctors assume certain medical problems just because Yosh has ds. Instead of asking if he used a nebulizer (he doesn't) they asked how often he needs it. The same with seeing a cardiologist, which he hasn't needed to do since we left the NICU six years ago. I have to wonder if they are creating a false history in order to cover their mistakes. With all Yosh has been through, this was the first time I was really afraid we would lose him. And even though he's home and getting better its so hard to see how tired he gets and I can see that he is frustrated that he can't do as much as he used to. But he's getting stronger every day and I'm sure he'll be his old self soon.
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Post by danikins on Feb 19, 2009 19:36:25 GMT -5
Kerri, I am so happy to hear Yosh is back home and getting back to his old self. What a scary time. Lots of hugs your way. Kim and Dani
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Post by Googsmom aka Jennifer on Feb 19, 2009 23:57:50 GMT -5
{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}
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Post by Jodi on Feb 20, 2009 1:53:33 GMT -5
Oh Kerri, my heart dropped when I read the first post! I'm am so happy for you that Yosh is home and back in school. Hope he continues to improve Jodi
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Post by sd112170 on Feb 22, 2009 15:58:36 GMT -5
Good to know Yosh is getting better. Prayers for you Mom. It can get hard for us to sometimes.
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