Infusions...do you talk to other families?

[Worried mama]

So every month we go for remicade. We see all the other kids and parents sitting in their rooms probably getting same thing we are. Nobody ever talks to each other...we all stay in our rooms. I so badly want to ask the others their stories, what's worked for them, what hasn't, etc....but I feel strange and don't want to pry and after all, they don't know me and will prob think I'm crazy. I just feel like we are all going through the same thing and it would be kinda nice to get to know each other. Just curious, do you ever talk to other families at your infusion? Would you be irritated if strange woman knocked on your door to say hello? :tongue:

 

[ronroush7]

When I was getting Remicade, there were a lot of cancer patients there and I mostly stayed to myself. I don't think it would hurt to talk to people.

 

[my little penguin]

Our infusions were all in large infusion clinic room with stations for each family so very easy to talk if you wanted to
DH took ds so I have no idea if they talked to others

 

[FrozenGirl]

I don't have separate rooms at my infusions, it's generally 2-4 people in a room. That said I do chat to people sometimes. I would just pop in and ask how it is going. If they seem receptive, great start a conversation. If they seem leery or unengaged maybe just back off. That said I would try chatting. I'm sure lots of the other families feel the same way and wish they had someone to talk to.

 

[pdx]

Our first infusions were in the oncology unit at a Children's hospital, so most other kids were getting chemo. Now we're at an adult infusion center, and most of the other patients seem to be over 60. I often exchange smiles with the other people there, but that's all.

If we were at an infusion center with other kids with Crohn's, I would love to talk to other parents, but I would feel awkward starting the conversation. It would be made a bit more difficult, too, by the fact that I don't think my daughter would want to be social at all.

 

[Worried mama]

Yes, we are at chop. In the GI unit, so probably most there are getting remicade. You can hear the nurses calling down for remicade all the time so I think we are all in the same boat. Plus, it's very boring sitting there for 3 hours....it might pass the time to be chatty!! And I might learn something new...

 

[Tubes]

When I was in my teens I got soooo many infusions during the period it was just a bunch young people ranging from ages 5 thru 17.It was a huge room with a bunch of sofas set up nobody wanted to talk and everybody was miserable.After a while I would bring a video game system and that would get the young ones talking but the teens would only talk to their parents.

From age 20 on its usually me with a bunch of cancer patients that I was 50 years younger than the youngest person.I can count on 1 hand the times that I've seen anybody talk to anyone but their relative or the tech.

About a month ago I just finished a 6 week cycle of infusions(3 times a week).Again it was me with a bunch of cancer patients that didn't want to be bothered cause they wanted to watch Kelly & Michael,Let's Make a Deal and Price is Right.I'm delightful and it was so dull sitting there for hours it was really depressing.Wifi was poor.i read tons of books.

 

[Clash]

My son's GI(large GI group), have their on IV lab. The kids go back by themselves. They are in a large room and the GI has Wii, Xbox live, a big flat-screen with DVD player etc so the kids choose a movie or others play video games. The parents have a waiting room separate from the main waiting room and I've struck up convos fairly often. Most often it's the stories of their kids' journeys and always offers insight to our own.

 

[pdx]

My son's GI(large GI group), have their on IV lab. The kids go back by themselves. They are in a large room and the GI has Wii, Xbox live, a big flat-screen with DVD player etc so the kids choose a movie or others play video games. The parents have a waiting room separate from the main waiting room and I've struck up convos fairly often. Most often it's the stories of their kids' journeys and always offers insight to our own.

That sounds like a nice setup for both kids and parents!

 

[Clash]

I really liked it and enjoyed talking with parents going through the same thing. C liked it because the nurses cater to the kids ie blankets, snacks, drinks, etc. The age range can vary greatly in the lab but most often there were at least a few kids C's age. Still, I think most of the time C would fall out..always his modus operandi...if he gets still he sleeps! Ha!

 

[Maya142]

worried mama, we did infusions at CHOP too. The set-up is not really helpful for talking, but sometimes I was able to talk to parents in the waiting room. My daughter mostly liked to nap and watch TV so liked the privacy of the little rooms.

CHOP also has a support group for parents and teens - we've never been to that but perhaps that might help.

 

[DanceMom]

Our infusion center isn't really set up for mingling. There are about 20 bays, and from your bay you can't see any other patients. So many kids there are critically ill or in a lot of pain and don't want to play. It breaks my heart to hear crying and screaming for 6+ hours. We watch TV, browse online, and wait for volunteers to come by with something fun. Those volunteers are appreciated more than they'll ever know.

 

[crohnsinct]

Four years of infusions with one room with up to three kids and their parents. Not once has anyone talked about crohn's. We do however talk about movies, recent trips etc. I think the kids are not really too keen on the chatter about what's going on with their bodies etc.

That said, our center has a support group so anyone finding a need to talk could certainly find it there.

 

[CrohnsKidMom]

Our children's hospital has an infusion centre which consists of a big room with pairs of recliners for the patient and a parent. There are separate rooms off to the side, but they are reserved for the little ones, or for special cases. There are lots of smiles and "hellos" between everyone, but never a conversation. The nurses are great at small talk and that seems to suit everyone. This summer my son will start going to an infusion centre outside the hospital for every-other infusion. I'm not sure what the atmosphere will be like there, but I'm assuming it will be much the same.