United Brachial Plexus Network, Inc.

Ok, I have just found out that TIRR and TCH are two seperate hospitals. I realize that they both have the same dr's and the same ot, but I did'nt realize there was two different hospitals until I got Peytons package in the mail about his surgery in July and the package was from TIRR. So, anyone out there who has been to both and which did you like better? Is TIRR as child friendly as TCH. Does it have all the ammenities that TCH has? This will be Peyton's first surgery, he is almost 5 and I want him to feel comfortable and be catered to. Does this make sense? I would love to hear input from anyone.

Thank you,
Marnie

My 2 year old son, Andrew, had surgery at TIRR on May 1. This was his first surgery, so we have not been to TCH. I was originally told the surgery would be at TCH, so I did all the research, got all the info from Francine's website, etc, and then found out that it was scheduled at TIRR.

Since I've never been to TCH, I guess I can't fairly compare them, but I'll try to tell you a little bit about TIRR.

At TIRR you usually share a room with someone else. We shared a room with another 2 year old boy who had the mod quad surgery right before Andrew did. We got to be great friends with the family and it was reallly fun, but I can see how it could be hard if the wrong two people were matched up. It does make things a little harder. For instance, the first night Andrew did so well. He only woke up once during the night and he slept great. But the little boy in the bed next to us had a horrible night. He cried all night long. I felt so bad for him. But consequently I only got about 2 hours sleep that night and it was mostly in 20 minute incremements or less. But anyway, I think that is the major difference, shared room vs. private room. They say they only allow one parent to stay the night, so if there are two of you, you'll have to keep your hotel room. My husband went back to the hotel to sleep each night. The other family had the mom stay in the hospital the first night and the dad stay the second night.

TIRR doesn't have the all the fancy things that TCH does. They do have a little play room down the hall, where Andrew played the second day. They have little TV's next to each bed, but no VCR's in the room. They did have 1 on the floor and we asked to use it. It was a TV and VCR on a cart. They brought it to us and we ended up keeping it the whole time we were there. No one asked for it, so we didn't say anything. We would take turns with the other family putting in different video tapes that we had brought. It worked out fine.

TIRR has a cafeteria on the bottom floor. So food wasn't a problem. I think TIRR is quite a bit smaller than TCH, which has its pros and cons.

I don't mean to sound negative about TIRR. It was fine and we were only there for 2 days. The OT's actually are different at the two hospitals. Nancy is the OT at TIRR and she was wonderful. She was around quite a bit to make sure we were doing okay.

Best of luck with your upcoming surgery. I know what you are going through right now. The 2 months before Andrew's surgery were really hard for me. But now we're 3 weeks post op and things are going well.
If you have any other specific questions, feel free to ask. If you would rather email me that is fine too.

Good luck,

Connie

Hi Marnie,
Our daughter had surgery at TIRR last October. When she again needed surgery this year, I specifically requested TCH (she had had 3 prior surgeries at TCH). Although the family we shared a room with was just great, the room sharing thing is very trying. I was not impressed with the doctor who handled the follow up care or the nurses. They just didn't seem to be kid oriented if you know what I mean. I know that Nancy Conte is a vital part of the BPI team down there and has done some great things to improve our kids rehab, but the splinting process at TIRR was a nightmare and had to be completely redone once we returned home. This last visit was our first in the new additions at TCH and we were soooooooo very pleased with everything. Our nurse was precious, the room was quiet and private and everything we needed was provided.
I hate to be a downer on TIRR. I know there have been so many families who have had excellent experiences there. We just weren't so lucky.

Hi Marnie,
We just returned from our daughter's mod-quad last night. This was her first surgery and was done at TIRR. Our experience certainly was not what we had anticipated. We had heard nothing but excellent comments on TCH and TIRR, assuming they were both one in the same. After our daughter's surgery on Wednesday we never saw the surgeon again! Friday the resident came at 6:00 AM and pulled the JP drain while the splint was on, never assessing her incision site and staying no longer than 2 minutes. No one ever looked at her incision except for the OT. No nursing or doctor assessment at all! I myself am a nurse and my husband is a doctor and this took us by surprise. Finally the pediatrician assessed the incision site only because we asked her to do so 1 hr before our daughter was discharged. The only time we saw our nurse's was when they brought the medicine (which we had to ask for every time). And no one really tried to talk or get to know our daughter.
We did however luck out with the room situation because the census was low and had our own room but my husband still had to stay in a hotel room at night while I stayed with my daughter. The OT's, Nancy and Heather, were wonderful. They did check in with us several times.
Sorry to be such a bummer. I wanted nothing more than to have my baby catered to at such a stressful time as this and it just didn't happen that way.
Good luck,
Patti

Hi Marnie,
We just got home 2 days ago from our daughter's Mod-Quad surgery. This was our daughter's first surgery and was done at TIRR. Our visit there was not what we had anticipated. Especially after hearing all the wonderful comments about TCH and TIRR, assuming they were one in the same. We did not see the nursing staff much, in fact the only time a nurse came into our room was to give medication (which we had to ask for every time). No one really took the time to get to know our daughter or even talk to her. However, The OT's Nancy and Heather were wonderful. They came to our room often to check on us. The splinting process was long but thorough.
Our daughter's surgery was on Wednesday and that was the ONLY time we saw the surgeon! His resident came to our room on Friday at 6:00AM to pull the JP drain. He stayed no longer than 2 minutes! The nurses or doctors never assessed our daughters incicion. The pediatrician finally took a look at the incision 1 hour before our daughter was discharged and only because we asked her to do so. I am a nurse and my husband is a doctor and we found this to be quite odd from the clinical perspective.
We did however luck out with the room situation. We did not have to share a room because the census was low. Although my husband did stay in a hotel at night while I stayed in the hospital with my daughter.
Sorry to be such a bummer. I desperately wanted my baby to be catered to and unfortunately this did not happen at TIRR. In the end what really matters is the skill of the surgeon and our daughter's injury to be resolved.
Good luck,
John & Patti in NC

Marnie my son had the mod quad @ TIRR almost 2 years ago. It was his only surgery so I can not compare it to anything. We had the quad room, which we shared with 3 other families. It was nice, but trying at times. I dont think I got much sleep while there. My husband slept @ the hotel. I dont want to get into much on here, but feel free to email me. I have heard of other people rescheduling their surgery so they can have it done @ TCH. If that is what you really want then request it. Nancy the OT was great and I have seen her @ the PA picinic. The splinting process can be a pain, depending on your child. My son was a pain so the whole process was torture for us. Email me if you want more details. Good luck.

Just noticed my email address is wrong. Trying to have UBPN change it. Well here is my new email address incase you want to contact me. Herdr3@yahoo.com

My daughter had her first surgery at TIRR and her second at TCH. I understand TCH has remodeled and that our kids have private rooms, but it wasn't that way when we were there. For primary surgery, we toured the hospital(tirr) prior to surgery, met all of the nurses, they were wonderful, they made us feel like out daughter was a priority. We were only in recovery for about an hour before going to our (already reserved) room. Later in the day, another child with BPI joined us. The room was huge and both of our husbands spent the night both nights. The nurses told us if neither of us had a problem with it, they would look the other way. We had a little pull out bed that we shared. On the other hand, at TCH, we were in recovery for 10 hours post mod quad. We were repeatedly told that there was no room available for our daughter (whose surgery was planned two months in advance, hmm. Later, when my child started to desat. hold her breath and turn blue, I had to leave her with my sister while I "found" a nurse. When we were given a room, it was 1/3 the size of the room at TIRR. We had to share the room with a child who was ill and undiagnosed, she was running 104 fever. We were concerned that our daughter would catch what ever this was, the mother said the doctors were saying she had a virus. I had my sister purchase a sleeping bag for me so that I could sleep on the dirty floor. My husband who also stayed slept sitting up on a plastic chair. We did not feel like much of a priority. It seemed to me that with so many deathly ill children, we were seen as not that important. That said, I am thrilled with the results of both surgeries and would highly recommend either one. After all, it is the result that count and not my comfort right? I just wanted to say to you that not everyone's experiences are the same, ours were quite different. If my daughter needs another surgery, I will request TIRR. Sorry this was so long.

I also am having surgery in July and changed the date due to it being at TIRR.....I had never heard of it....but I wanted to be at child centered hospital. After reading these replies I am glad that we changed.

But the surgeons are all the same..

Gayle

My son, Michael, had the Mod Quad at TIRR on 5/15. I was a little unsure when I found out that it was scheduled there instead of TCH (I had read all the wonderful things about TCH on Francine's website and was uneasy about going to an "unknown"). I was unable to reschedule to TCH, so we went ahead at TIRR. I have to say that I was very impressed and happy with our treatment at TIRR. The nursing staff was compassionate and always around. They were friendly and *human* - which both my aunt (who went with us) and I really appreciated. I had a few minor crisises (Michael pulled out his IV a couple of times, and opened his drain bottle once - end result of both was blood everywhere - ick) and the nurses responded quickly to my calls for help.

The OTs were great, like other people have said. Both Nancy and Heather checked on us frequently, answered our million questions with good humor (even when I asked the same question 16 times) and professionalism.

We did share a room which I can imagine could be a problem. For us, it was fine. We shared with a 23 month old girl who also had the Mod Quad the same day. My aunt stayed overnight - I can't imagine how I would have gone to the bathroom if she hadn't since I slept in the bed with Michael on top of me (he's 13 months) and the nurses were just fine with it (they went and got linens and extra towels for my aunt.

The hospital itself is not very little kid friendly. There isn't a whole lot for a small child to do. There are wagons for pulling them around and a small playroom on the 6th floor (pediatrics) where we stayed.

There is a cafeteria downstairs and the food seemed perfectly fine and actually not too terribly expensive - but then again, I'm used to Washington, DC prices...

I do have a few pics of the front of TIRR, our room and the hallways on the 6th floor if anyone is interested... Just let me know and I'll scan them.

Overall, I was very happy with our experience at TIRR. If we have to go back and Michael is older (he would be, obviously!), I may consider asking for TCH since he did get pretty bored towards the end of our stay and it sounds like TCH has more fun stuff for the kiddos....

I hope that that helps!

Sally