Riley Hospital and Ronald McDonald House

Just thought I'd post some information about some things about Megan's people and places of care.

Riley Hospital has been ranked 3rd in the nation for Pediatric Urology Care by US News. Scoring 93/100, it is highly recommended. Interesting how we moved to Indiana, only 3 hours away from one of the best hospitals for her specific problem (Texas Children's hospital in Houston didn't rank for Pediatric Urology). According to US News,

[how] high a hospital was ranked depended on how well it did in three areas: reputation, medical outcomes (such as cancer survival), and care-related indicators of quality (such as the number of patients, nurse staffing, and availability of specialized programs).

The other 2 hospitals ahead scored 100 and 99.6, and from what I can tell it's the nurse:patient ratio that is what they scored lower on. Things like surgical complications and infection prevention were actually higher at Riley- and to me those things are FAR more lasting problems that how many patients the nurse had- 'though that can lead to problems after surgery if the nurse is distracted and cannot take care of all his/her patients. But, I have some knowledge and I know how/when to ask for attention/care.

Mark P. Cain is her Urologist and surgeon. He is a highly published specialist that, apparently, is one of the best in his fields (Here's some stats about him). He has turned down appointments at many other institutions and programs to stay here at Riley (although that might be partly due to his family). I put his name on the prayer roll when I was there on Saturday. I didn't know why- but I felt like I should. Come to find out the morning of Megan's surgery, he apparently has been battling testicular cancer and has undergone chemotherapy. All this and he is still working (although at a much-reduced load!). He looks really good, and he's super optimistic. The hidden blessing in that is his type of cancer can have a 100% cure rate- and he looks to be on that path.

Dr. Cain was assisted with Megan's surgery by a 3rd-year resident in urology, Dr. Bahler. I don't know much more about Dr. Bahler, other than he plans to go for a fellowship after he finishes his 5 years in his urology residency.

Dr. Rhee is the fellow who has had the most contact with us on the floor. She stopped by during surgery check in to say "hi" and we have seen her on the floor when she makes rounds. She is awesome- reassuring, confident, and knows her business. She's willing to talk to an attending if there's any concern, and seems to deal well with the nursing staff. I'm really glad she's been the doctor to take care of Megan!

The nurses have been really sweet and are really good with the kids. I've had some frustrations and issues with some of the communication. Maybe this is the reason for the not-quite-perfect score? Oh, and probably the fact that the rooms are not private. Although, they will be after January. Maybe we should've held off on her surgery.... There are some benefits to having a roommate. When I stepped out to get Megan's puked-on-but-now-washed-clean blanket, Megan's roommate, Danielle, talked with her. She's been kind to offer movies, and give her encouragement with taking some (yucky) medicine. But there are many frustrations. These rooms are smaller than ones I had after my deliveries- and there is hardly enough space for the two beds and sleeper chairs. Megan's IV pole bumps into the roommate's pole and bed and both room door and bathroom door every time she gets up to go to the bathroom. You hear EVERYTHING that the other side is saying- there's not even enough acoustics or space to have any verbal privacy, no matter how softly you talk. Even whispers are mostly audible. There are separate nurses for each patient, which is good, but that means twice as many people in/out at all hours. There are windows facing the hall that cannot be covered, so the room is never dark, and especially isn't when the roommate leaves her tv on. Thankfully, she's been very thoughtful to keep the sound down or off! Megan got the window side, which is a little more scrunched in space (I think mostly due to the air vents- yeah, uh-huh, my chair is RIGHT NEXT TO THE COLD AIR BLOWING 24/7! and if any of you know me, you know I'm always cold, and this hasn't helped). The blinds can't be opened so they are always closed. There are some sheer curtains, which are mostly useless for anything but blocking out the fact that the blinds are closed. There's a dimmer light, but it can't be directed anywhere so a visiting person can't read without keeping a light shining on the patient bed. But, those are the bad things. The good things about the room- there is a sleeper chair, the bed is comfortable for Megan, there's a sink right at the foot of our bed (so we don't have to go to the bathroom sink every time), we have the entire shelf-wall of the air vent to place our stuff. There's a great little play room that has puzzles, games, scheduled activities during the day, lots of snacks and treats for patients. Each patient has her own tv and VCR/DVD with the little "remote" that controls the volume, channel, and has the call-nurse button. So, they've done some good with what little space they used (although the IDIOT who designed the doors messed up because if the room door is open, you can't open the bathroom door, which doesn't sound bad on paper, but it's VERY frustrating!) OK, I'll stop my soliloquy on the hospital conveniences (or lack thereof).

Ronald McDonald House is a place that provides services and accommodations for families who have children being treated at a hospital. It's run mostly through donations and volunteers. We have a small room with a sink and dresser and queen and twin beds. There is a bathroom with toilet and shower that is shared by another room. The public area has toys for children of all ages, a few large TVs, and a large kitchen/dining area with space in fridges and cupboards for personal food, but also a community pantry that has donated food free for anybody who needs/wants it. They also have people in the community bringing dinners a few nights a week. Another blessing? Apparently there are dinners being provided every night this week there! The cost of $10/night is there, I believe, just to give the patrons of the place a sense of "ownership" so they won't destroy the place (its a psychology thing). They also ENCOURAGE families to spend time with their child at the hospital, and only ask that the room be used at some point, just so it isn't "wasted". It is basically across the street (10 min or less walk), and there's a shuttle than runs between the hospital and the House. I could not have asked for anything better! And, with how many people use this place, it is truly a blessing and miracle that I got a room. I called and put my name on the waiting list in August, and I didn't know I'd have a room until I was actually driving down to Indy. Wow. It would be even better utitilzed if I were here with anybody else. It'd be a great place for families (and siblings of kids) to stay while a child was in the hospital.

The other great thing, to my relief and rescue from having to consume nauseating McDonalds food, is that there is also a Ronald McDonald House at Riley, here in the hospital just one floor down. It has only 6 rooms, and those are reserved for families with patients in the ICU (which I think it absolutely appropriate!. But for the use of all the families of patients in the hospital, there is a kitchen and dining area, donated food, a laundry (which really came in handy when Megan threw up on her blanket and I was able to wash that and have it back to her in an hour!), and nap rooms and showers. I made myself some scrambled eggs, and dined on Panera bread (day-old donated; still really yummy and fresh). They also have dinners in crockpots, sometimes donated, sometimes made by the volunteers from scratch. This has been a huge blessing, and I am so grateful for the escape there. It's been good to talk with some of the other families in the hospital. I met the father of a 16-year-old girl who got a kidney transplant and is doing great, and the Amish grandmother of a 15-month-old girl who doesn't make lung surfactant and is on a respirator with a tracheostomy and is not expected to live for many more months. There's is a tension there, too; I can feel sorrow, heartbreak, fear, relief, hopeful/desperate waiting).

I would definitely encourage any of you, if you were looking for some community service, to see if there is a Ronald McDonald House nearby, and see if there's something you can do for them. Donations, I'm sure, are welcomed in many forms.

We are actually at the House (not the House at Riley). There are 52 rooms, two large kitchen areas, game rooms, small library, etc., and a couple of laundry rooms (were asked to launder the bedspread and mattress pads, clean the mirror and sink in our room, and vacuum the floor before we check out). I'd include pics, but I forgot to bring my adapter to upload fotos from my camera to the computer. You'll have to wait until I get back home to see pics of our room and of Megan. She was soo cute and sweet last night, excited for the special time with Mom.

Oh, and I have free parking at the house. I parked in the Hospital garage the morning of the surgery. I didn't want to make Megan walk over with all of our "stuff": blanket, giraffe, Riley (her doll she got when she first came to meet with Dr. Cain), books, my laptop (Travis' old Mac), more books, scriptures, purse, etc. etc. I left a LOT of stuff behind at my room, too. Lots of things to entertain a 5-year-old. I haven't spent as much time there because I haven't wanted to leave Megan very much. But, it has been great to know that I can go get a shower and a nap and some food and have a place to stash more of our "stuff". Again, it would be even better for families, especially with kids, so that they could have things to do and a place to be instead of the (shared) hospital room.