Well Riley has consistently been ranked pretty high in the CF world. As far as docs, they should PM me for more info or questions. But I can say that if you are in the hospital, you are not likely to see the same doc that you see at Clinic visits. Although I suspect you can ask for that doc to be your regular pulmonologist.
They typically bring you in every three months to Clinic unless something is going on and you need to be seen more frequently. You are not left waiting endlessly in waiting rooms. They are swift at getting you in a room and getting you X-rays, PFTs, etc. They are efficient. They schedule one clinic visit out during which you see the nurse, the respiratory therapist, and the pulmonologist and have your pulmonary function testing each time as well as a throat swab. If you need to see others they can usually pull them in. They also typically schedule a yearly visit that involves all personnel - dietician, social worker, are added and they do chest X-ray and blood work in addition to the every three months routine. But they will tell them all that and it may be different for infants. Whatever you do, try to avoid leaving after 3:30 pm. The rush hour traffic downtown is pretty annoying, especially if you're headed north. South is bad enough, but goes fairly smoothly.
Parking for parents is in the lot at the end of Riley Drive, just past the entrance to Simon Family Tower, which your friends will now know is the hospital portion of Riley. They will give you parking passes if you are in the hospital. If its a doc visit, you take your ticket to your clinic visit and have it stamped so you only pay $2 per day no matter how long you are there. If you use the privately owned lot when you first come up Riley Drive, which is right next to the Outpatient Center, they will charge by the hour. Forget it. You can get from the parent parking to the Simon Tower to the Outpatient Center all inside one huge building by walking through the endless twisting turning hallways. But they are well marked with signs and directions. And its a newly remodeled facility so its a pleasant walk. Bright, colorful, lots of neat tiles, animals and art for the kids to look at. The CF Clinic is now halfway between the two. It used to be in the Pulmonology MSA in the Outpatient Tower but they have moved it to the new Research Center section of the building. Unfortunately they are rehabbing a lot of that area so the entrance changes periodically! Right now you simply take the glass elevators up. Riley helps you get around by making all the elevators different in some way. Glass, green, blue, red, outpatient tower, etc. Then they can tell you which elevators to take to your destination and it makes it easier.
If your child is hospitalized, there is a Ronald McDonald House inside Riley on the first floor. Use it. Real (free) food, fruit, coffee, tea, chairs, tables, snacks, and a place of respite. Don't worry with introductions, passes or the like. Just walk in and they will have you sign in and show you around with a smile. It's small, but pleasant and friendly. There is also a nice library on the first floor with computers too. Use it, walk in and feel free to check things out. They will help you.
You can use their little red wagons to haul your gear and/or children around. I just suggest you bring your Clorox wipes and a bottle of hand sanitizer. Makes me feel better anyway! For Clinic visits, you should be given a mask either at the front desk if you ask for one, or when you go for PFT testing, which is unfortunately still in the Outpatient Tower. I suggest you bring a sharpie to make funny faces on your mask. Might as well have fun while keeping other peoples germs away from your kiddo.
They don't have generally available email to communicate with docs or nurses, although the dietician will give you her email. Nice lady. Very helpful. If you have problem or question or want to make an appointment, you call the main number, tell the nice person who answers (they get to know you pretty well after awhile) and they will send a message to the nurse to call you if needed. It can take all day. If its a sick call, sometimes they are faster. Sometimes. Not always. I keep my pediatrician in the loop, since they are not good at sharing records - or so it seems. They are not any good to contact after hours - if it's an emergency, you can talk to the resident on call at Riley, but chances are good they will just tell you to come in to the ER. And you may need to do that. At least that's always been my experience. I generally call both my pediatrician and the Clinic whenever I have a problem! I communicate between them since they're not good at it. In other words, I always check with the CF clinic because there are things you don't think are CF related at first, until you find out that they are! The CF Clinic is pretty good about diagnosing over the phone and calling in scripts, or using your ped to get more info from an exam.
if you need a gastroenterologist or other specialty, they have them at Riley, but not typically part of the team you see in Clinic. They will send you to their department and appointments are not well coordinated - likely to be different days unless you work hard at it. If you need an ENT, PM me.
Meals? Hmmm. They used to have a McDonalds. They decided that wasn't healthy. They kicked them out. Come on peoples, a kid thats been stuck for 6 vials of blood, wrestled on an xray machine and had a qtip stuffed down their throat, deserves a nasty happy meal with a brand name toy and a good old chocolate milk shake. But, in their place the politically correct powers that be have a strange mix of organic and health food which most kids want nothing to do with unless that's what they get exclusively at home. I personally like health food and veggies. I don't like theirs. They do have a kids menu - very short - but not well advertised so you have to ask them what it is when you go in - its in small print at the bottom of the display case. But they do have a smoothie bar - with HUGE adult sized cups. Not a good kid place. Tell them you want it in a small cup and let them figure it out. They weren't open long when i pointed out the lack of a kids cup, so maybe they've fixed it by now. Been a couple of weeks. They do have a cafeteria style restaurant that makes bankers hours look realllly looooong. Catch them when you can. It's a little better. They did switch out the good wrap and deli bar for sushi though. Ugh. There is also a sandwich place that is much kid friendlier on the other side of the facility - close to where you come into Simon Tower and the parent parking garage. It's next to one of the gift shops. Much better but small. For coffee and pastries you have a coffee bar similar to Starbucks and they have a few nice salads and croissant sandwiches and pastries. And they stay open all day but close at night. I recommend it. They are over by the marginal health food restaurant. And unfortunately there's not a lot open when your child is in the hospital and goes to sleep finally and you sneak out at midnight to get some dinner. You could starve at Riley for real adult food after 7 or so. So go when it's dinnertime even if you get food in a bag and put it in the fridge for later.
There are not many easy places to go eat outside of Riley. It's a downtown campus location and you would have to explore student unions, etc to find others. Too much walking or driving. Lots of wonderful places to eat downtown, but far away and expensive for the most part.
After a clinic visit, or especially after the yearly visit, I lighten things up with a visit to any of a number of WONDERFUL kid places nearby. The zoo is marvelous, as is the Children's Museum - one of the best in the world. Lots of museums too and my kids even love the Art Museum which has really nice outdoor grounds. Or I just let my guy pick his reward from Target - usually Pokemon or Legos!
Well, that's all I can think of off the top of my head. Just let me know how else I can help. And welcome to Riley.
Please note . . . This dissertation reflects my PERSONAL experience and opinions of Riley, so if you disagree feel free to chime in, but understand it for what it's worth!
