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Raising Special Needs Kids Raising Special Needs Kids

Blagh! Random-ish GI phone call has me on pins and needles *UPDATE*

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This is really no big deal compared to the normal stuff, but it just, blegh, totally threw me off. 

I got a call  today from GI to schedule botox for Tyler's anus/rectum. It's supposed to basically paralyze the muscle which will mean stool will  basically be seeping out all the time. It sucks, but we are willing to try anything at this point. Anyway, last we had spoken to GI in late December (we are due for our monthly appt) , we were holding off cuz Ty was doing quite well. Granted now we are back to enemas once a week, but that's better than having them everyday. The lady said that she just got the orders Monday and sometimes the dr's get a little ahead and she was probably planning this for our next appt but put the orders in now. So she is calling the nurses and having them call me before they schedule it. 

So now I am on pins and needles wondering what the dr is thinking and wanting and waiting to hear from the nurses. On one hand, this is kinda opportunistic because I needed to call them anyway to harass them about our monthly  GI appt still not being scheduled again and to ask what info they have heard from Cincinnati yet. But this means another procedure. Being put under again. I thought we wouldn't need under again until  Cincinnati. At the same time, if he is going under, I may talk to genetics, they have been wanting a muscle biopsy but wanted to wait until he is under for another procedure and while I would rather wait for the DNA tests to come back, I would like to take advantage of him going under as well. Blagh. Too much in  my mind!

**Update**  so I got a call this morning that GI had a spot tomorrow morning so we are seeing her then. And then we have a late afternoon pulmonology appt and the hospital is an hour away from home, so we are spending the day at the hospital, not looking forward to it! Then this ftaernoon I got a call from our GI nurse. She said that the GI decided to do the botox and flex sigmoidoscopy because Ty goes back and and forth all the time and while he is doing good right now, they want to do this hoping to extend this good streak. So we will see. It makes sense and I do agree with them. Just being proactive instead of reactive. I prefer this over hospital clean outs! Then they weren't happy that we haven't been contacted by Cincinnati and they haven't contacted our GI either. She called them yesterday morning and is calling them again tomorrow morning. She hopes they will hear something by our appt in the morning, but I personally doubt it and am seriously losing not only hope in their hospital, but confidence! Do I really want to take Ty for invasive testing across the country in a hospital who can't simple communicate with our dr's?! And sadly they are supposed to be #1 in the country for the testing we need! Blegh. 

Help Tyler Get A Seizure Response Dog 1/26/13

by on Jan. 23, 2013 at 1:11 PM
Replies (11-20):
Mipsy
by Chelle on Jan. 24, 2013 at 10:34 PM

bump for update

mandee1503
by Amanda on Jan. 24, 2013 at 10:41 PM
1 mom liked this

Glad you were able to get an appt so soon. Hope you hear from Cincinnati.

cheergurl84
by Member on Jan. 24, 2013 at 10:42 PM
Good luck with everything! Is Cinncinati for their motility program? If so, I know someone on FB who has a daughter with a cecostomy. They recently got a call from Cinncinati and will be heading there in 11 days. From the sounds of it, their bowel management program is scheduled for a certain time each month. She's expecting they may be there for up to 5 weeks.
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Mipsy
by Chelle on Jan. 25, 2013 at 12:27 AM

Yeah, it's their rmotility program, but we should only be there for a week for what we are doing. 

Quoting cheergurl84:

Good luck with everything! Is Cinncinati for their motility program? If so, I know someone on FB who has a daughter with a cecostomy. They recently got a call from Cinncinati and will be heading there in 11 days. From the sounds of it, their bowel management program is scheduled for a certain time each month. She's expecting they may be there for up to 5 weeks.


darbyakeep45
by Darby on Jan. 25, 2013 at 6:00 AM

Hugs!  Thanks for the update and please keep us posted:)

JOEJULA
by Member on Jan. 25, 2013 at 9:22 AM

That sounds crazy. So much going on at one time. I hope everything works out. Do they have a diagnosis for your little one yet? I have heard Cincinnati is amazing. Good luck!

Elyssa414
by Elyssa on Jan. 25, 2013 at 9:31 AM
*HUGS*
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Mipsy
by Chelle on Jan. 25, 2013 at 2:19 PM
He's got a lot of them. With his gi tract he has gastroparesis, constipation, and dysmotility. They want to send us to cincy to see where his intestines are affected the worst.

Quoting JOEJULA:

That sounds crazy. So much going on at one time. I hope everything works out. Do they have a diagnosis for your little one yet? I have heard Cincinnati is amazing. Good luck!

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Mipsy
by Chelle on Jan. 25, 2013 at 2:22 PM
Thanks gals! Long story short, I chose not to do botox but 2 enemas a week. I dont want him going under and don't like the idea of paralyzing that muscle. The decision was mine to make, he is more accepting of enemas now. Still nothing from cincy and they aren't happy about it and told me I coukd stsrt contacting them so i plan on starting monday. i may email them today. So we will see.
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gma12.1
by on Jan. 25, 2013 at 2:26 PM

 Good Luck Momma on all of this stuff going on!

My Second time around & loving it!
boy n girl     toddler girlLina

The Twins

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