United Brachial Plexus Network, Inc.

I was told a month ago that Andrew's surgery would be done at TCH, now they tell me that it will be done at TIRR. I've done all my planning using Francine's website about TCH.

I was wondering what anyone could tell me about the differences and what I can expect at TIRR.

I guess the stress of all of this is really getting to me because I'm sitting here in tears because I found out I'm at a different hospital. I guess it shouldn't really make any difference.

We always thought that Andrew wouldn't need surgery. When he was first born, of course the doctors told us that within 6 months he would be fine. But even when he was 7 or 8 months old he seemed to be doing so well, that we still thought he wouldn't need surgery. I haven't let myself think too much about the surgery other than the planning part of it. But today I was reading Francine's website about what to expect on the day of surgery and then everything kind of hit me and then right after that I found out I wouldn't be at TCH. I loved the fact that I had all of the info from Francine's website so I would know what to expect. Now I feel like I'm in the dark.

Well it has helped some just putting my feelings into words. It seems that there isn't anyone that would really understand what I am feeling. I want to thank everyone for all of their encouragement and support.

Thanks,
Connie

I can't offer you any information about TIRR vs. TCH, but I can say you've found people who understand the emotional rollercoaster your going through. I too just found out from TCH that my daughter (21 mos) should have the mod quad. We were certain that she did not need the surgery because she had been responding so well to the therapy. It came as a shock, but I've found this board and the people that write on it a tremendous source of strength, information, and inspiration.

Take heart Connie, TIRR and TCH are not that far apart geographics-wise.

The important things are;
1. It's the same doctors doing the surgery. (maybe a different anesthesiologist)
2. You'll get a fantastic therapist.

If you're still not comfortable, maybe you could call and tell them you prefer TCH. Did they give you a reason for the switch?

Good luck!

Connie - don't fret - a lot of people go there. I hope they will come forward and if they don't I'll try and dig up some old posts for you.

Nothing really changes except for the building you go to. (at least I don't think anything else changes).

You may want to call down there and find out what the pre-op post-op scenerio is like to see if that's the same... like do they stil give IV in the OR once the child is asleep? Will they give purple juice before? When will you be called into the recovery room? etc etc.

Nancy Conte is there and she's really nice (she's the OT that does the splinting). I met her at the PA picnic and people always talk about how nice she was during the splinting process.

I'll go searching around a bit later....
-francine

Our daughter just had the mod quad surgery done at TIRR on 2/26/02. It is a much smaller hospital and not as new as TCH. The rooms are also not as nice as TCH, but you will only be there 2 1/2 days. The family waiting area is VERY small but the surgery time is shorter for the mod quad. We went to cafeteria for awhile. The hospital rooms are smaller and we had to share a room with another child (not BPI) because they were pretty full. There is no sleeper sofa so it isn't really possible for more than one adult to stay in the room with the child. I had a chair that pulled out into a bed. The nurses (especially Alice)and anesthesiologist were great. They did give my daughter who was 13 1/2 months old a "happy cocktail" before surgery and were very accommodating when we asked to have her IV put in her foot because she sucks her thumb. The do wait until the child is out to put the IV in. We even asked them to put an "X" on her right hand so they knew which side to operate on!!! (Can never be too safe, plus that was done during her primary surgery.) Dr. Shenaq did the surgery and he was great. Nancy Conte, OTR made our daughter's splint and she was wonderful and very friendly. She actually pioneered the SOL splint for the mod quad surgery so she definitely knows what she is doing. We stayed at the Holiday Inn and it was a twenty minute walk to TIRR or you could take the hotel shuttle that runs every half hour from 6:00 am to 11:00 pm. If you want any more info, please feel free to email me. I could even send you a picture of the building.

Connie, I found myself in the same situation about a week ago. I called Lisa davis and told her we prefered TCH it was as simple as that she changed the surgery date from May 13th to the 14th and we will now be at TCH and Dr. Nath will do the surgery. If you are uncomortable TIRR I would try to switch. I wish you Luck!

The nurses and anesthesiologists at TIRR are wonderful and very accomodating. They use the same room for pre-op and post-op and there are only 2 beds. That's one part I REALLY like about TIRR. And you'll get to be with your baby within minutes of him coming out of surgery (I LOVE that part!) After the nurse calls for a room for you (3rd floor), it's only about 30 to 45 minutes before you're on your way upstairs to your room. My son had his last 2 surgeries at TIRR (C7 transfer that was put off ((April 2000)) and ModQuad ((October 2000))), and both times we had to share a room with another patient (non-BPI). He had his primary surgery at TCH in August, 1999, so I have no recent experience with them.
My prayers will be with you. Your experience won't be any different than Francine's website except for the location of the surgery. Feel free to email me with any questions.
Sali

excuse my not knowing but what does TIRR stand for? Jameson had his surgery at St. Judes right next door to TCH and it was fine...I think it's the doctors that count not the room they do it in.
T.

Texas Institute for Rehabilitation and Research

=)