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Old 03-16-2010, 07:48 PM   #46
Mtopher4
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Hi I'm subscribing

Love the big smiles. I'm sorry he keeps getting so uncomfortable

What is a fairygodmailer?
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Old 03-17-2010, 07:20 AM   #47
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The gi has come up with a "plan". He is increasing one of his constipation meds. The fact that he is on constipation causing meds for his bladder and he is low toned is working against him. Also he is increasing his water intake. His weight is down again so he is increasing his formula and he is changing it to something without fiber as right now it is working against him till we get him "over the hump". Once we do that we will revisit the fiber. He said he cannot keep going like this. His intestines will stretch and kink and cause some big problems if we dont get it under control. He was born with a malrotation that was repaired at 5 weeks old so he is at increased risk.

He did get outside and play last night and that is great to see. Tomarrow he goes in for his veeg then Friday is a big day for urology apts. Then weve got this week down whew!!
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Old 03-17-2010, 07:49 AM   #48
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Tonya,
I'm sorry for the recent problems, but I hope they are short lived! I'm glad the GI is on it and hopefully the changes will resolve the constipation!

I'll be praying for the rest of your week! Does Ty deal okay with the VEEG? Is it portable or does he have to stay attached to the wall? They are hoping to move to portable units at our hospital, but haven't yet. It would've been helpful this summer when Noah was hooked up for the better part of 4 weeks!

Hoping the rest of the week goes as smoothly as it can!

Best,
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Old 03-17-2010, 07:50 AM   #49
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Quote:
Originally Posted by Mtopher4 View Post
Hi I'm subscribing

Love the big smiles. I'm sorry he keeps getting so uncomfortable

What is a fairygodmailer?
Welcome to Ty's ptr.

Hopefully we are on a good path now to keeping him painfree. It will take a while but the gi said he thinks our new plan will help.

I do believe a fairygodmailer is when someone on the boards goes to WDW they will send a postcard from one of the characters if you request it.
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Old 03-17-2010, 08:45 AM   #50
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Hey Tonya,

Just wanted to let you know I am still here following along!!!

Brigitte had a malrotation too. It was found 6wks after her first open heart surgery. She had surgery to correct it and had part of her intestine removed. She has had horrible constipation since birth. She is averaging about every 11 days or so with a BM......not fun. We got a referral to urology yesterday too!!!

Hope you guys are feeling better soon.
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Old 03-17-2010, 09:41 AM   #51
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Hey Tonya! Just peeping in once more before we go! Keeping you guys in my thoughts for the veeg and uro appts, hopefully they'll be able to figure something out. Love the beach towels..very cool!
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Old 03-17-2010, 11:34 AM   #52
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Hi Tonya, just wanted to say you and Ty will be in my thoughts with all his appointments this week. I really hope they have some answers for you.
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Old 03-17-2010, 05:35 PM   #53
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Quote:
Originally Posted by noahsketomom View Post
Tonya,
I'm sorry for the recent problems, but I hope they are short lived! I'm glad the GI is on it and hopefully the changes will resolve the constipation!

I'll be praying for the rest of your week! Does Ty deal okay with the VEEG? Is it portable or does he have to stay attached to the wall? They are hoping to move to portable units at our hospital, but haven't yet. It would've been helpful this summer when Noah was hooked up for the better part of 4 weeks!

Hoping the rest of the week goes as smoothly as it can!

Best,
He does "ok" once we get past the glue. It sends him into a rage that I do not like to see. The last one I walked out crying. He was in for a week with that one. I can't imagine 4 weeks in that room We do not have the portable units unless they have gotten them since last May.But I do not believe they do. I usually take a ball to play with in the room so we can do something that wears him out. Although the last time they wanted a sleep deprived veeg and they got it. He didnt go to sleep till after like 6am. My kid was peddaling an excersise bike at 4am They brought all kinds of things to keep him busy lol.
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Old 03-17-2010, 05:39 PM   #54
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Quote:
Originally Posted by pnutallergymom View Post
Hey Tonya,

Just wanted to let you know I am still here following along!!!

Brigitte had a malrotation too. It was found 6wks after her first open heart surgery. She had surgery to correct it and had part of her intestine removed. She has had horrible constipation since birth. She is averaging about every 11 days or so with a BM......not fun. We got a referral to urology yesterday too!!!

Hope you guys are feeling better soon.
Thankfully they did not have to take out part of Ty's intestine but it sure left him with horrible constipation. We ended up back inpatient for another week the day after he was released just because he was so backed up. 11days Bless her heart! Ty is going once a week and he gets miserable. But even when he is going that one time he is not entirely getting cleaned out. I hope she is ok Urology wise. Bless her heart. She doesnt need that added on
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Old 03-17-2010, 05:40 PM   #55
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Hey Tonya! Just peeping in once more before we go! Keeping you guys in my thoughts for the veeg and uro appts, hopefully they'll be able to figure something out. Love the beach towels..very cool!
Thank you Amanda! I hope you and Piper aren't in Club med too long! Thinking of you both. I hope she feels better soon.
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Old 03-17-2010, 05:43 PM   #56
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Originally Posted by Momofwishkid View Post
Hi Tonya, just wanted to say you and Ty will be in my thoughts with all his appointments this week. I really hope they have some answers for you.
Thank you Jennifer!



Sorry I did the posts the hard way. Still dont know how to mulitquote
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Old 03-18-2010, 12:10 PM   #57
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I am back on board and following along again!
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Old 03-18-2010, 12:43 PM   #58
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I hope the Dr. has him going in a positive direction now. malrotation's are common with Ashley's syndrome too but that's one of the things she didn't have... ((((Hugs))))
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Ashley'sMAW pre-trip planning http://www.disboards.com/showthread....1#post35407954




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Old 03-18-2010, 09:41 PM   #59
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Think of you as the week and Ty's appointments are wrapping up.
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Old 03-18-2010, 10:51 PM   #60
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I am back on board and following along again!
Thank you for finding us again
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