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.
by natesmom1228January 23 at 1:15 PM
HUGS!! I hope you hear from the nurse soon. Keep us informed please.
by mandee1503January 23 at 1:25 PM*hugs*
January 23 at 2:17 PM
Thanks, and I will nates mom. I want to call them so bad cuz I planned on calling them anyway, but I want to give them a chance to get around to calling me. I don't wanna be all paranoid mommy on them, so I will be on here ><
by jjamomJanuary 23 at 2:30 PM
Hugs! It does sound like a lot to take in, especially with not knowing exactly what the GI doc is thinking. Try not to stress too much until you know more (said the big black pot)!
January 23 at 7:50 PM
Well I got no call today, ugh. SO I will call tomorrow and see what is up
by letstalk747January 23 at 8:06 PM
so much going on
by sammygrl77January 23 at 8:07 PM(((Hugs)))
Those are really tough choices.
by darbyakeep45January 24 at 7:21 AM
January 24 at 9:42 AMThanks gals. I'm calling as soon as its 8am here
January 24 at 4:12 PM
We have an appt at 8:30 tomorrow morning. Guess we will discuss everything then. A little nervous, mostly about if they know anything about Cincinnati