Thursday, December 10, 2009

THANK YOU SHRINER'S

THANK YOU SHRINER'S HOSPITAL FOR CHILDREN...
I wanted to post a little about our experience while we were in the hospital. Faith was admitted the day before surgery and we were lucky to have a room all to ourselves. I was initially worried that we would have problems because I am not one to let go of Faith's home meds. We have spent a lot of time in hospitals and nurses/hospital staff don't like to give up control. So I was all prepared to have a battle royal to keep Faith's meds. With Faith's g tube and weird feeding schedule....I am NOT giving up control to ANYONE! So after some feather ruffling and policy quoting I finally was referred to the in house pharmacist who amazingly agreed to let me keep our meds as long as we informed nurses when we medicated her and kept her meds with us at all times. ( I wonder how we managed all these years on our own! LOL!) Anyway, after they realized we knew our stuff we were included in all the meeting and talks about Faith. After surgery we were sent to the EPACU- a critical care room with a nurse in the room all the time for fragile children (b/c of her seizures). A nurse was in room all night and they were quiet and helpful; watching closely for signs of pain or discomfort and keeping a close eye on our med regimen. The next day we were moved to another room, private and wonderful. During our entire stay we were respected and treated like a member of the team. The nurses were helpful and kind and they seemed to gravitate to us in droves when I would start medicating her or talking with a student nurse about our life with a special needs child. At one point there were at least 6 nurses sitting around listening to me talk about dealing with feeding tubes, seizures, meds, feeding schedules, hygiene etc. I think they were fascinated to hear real life experiences and successes and what worked. We were constantly questioned about our techniques and we even had a student nurse who spent several days following us around, learning about Faith and her life. We saw all Faith's doctors at least twice a day and they brought us copies of her x rays before and after. They have a wonderful child life program- arts, crafts, games, book readings and a STELLAR pet therapy program that Faith just adored! The cast team are wonderful, we just love them! The women are so diligent and caring- our dear Stephanie, cast tech, gave Faith candy cane legs for her parade. We love you, Stephanie! When our time came to go home we were helped out by two wonderful nurses who helped us devise a way for Faith to get in the car. I just wanted to give a snap shot of our experiences at Shriner's for other families out there who may be in need of their services, one day. THEY ARE WONDERFUL, TRUST ME! Last week I was approached by a Shriner asking us to let Faith be a representative child in the Shriner's Circus in the spring. We, of course, said yes! So Faith is going to be a star in the circus in March! Pictures to come!
Thank you, Shriner's!

6 comments:

Amy Genn said...

Wow! That sounds wonderful! I always hate being at the mercy of the hospital - because they NEVER get the meds to you on time!

And after all this time we've been getting to know each other....
I DID NOT KNOW SHE HAD A G-TUBE!!!

:)
Amy

therextras said...

I am more than impressed! I think I'm shocked you had such a good experience. And pleased. And grateful you shared here. By far I read more criticism of medical care than compliments (I do my share, too). I am so happy that you and Faith were treated well. This is definitely some prayers answered. Barbara

Candace said...

Amy, yes I thought we had talked about the tubes before but I could be wrong. Faith's is a Genie button style very low profile and almost unnoticeable. She got it 3 days after her first birthday, almost 5 yrs ago


Dr. Boucher, I know I critique the health care system a lot myself. WE do have a lot of bad but the Shriner's hospital was wonderful much different than any other that we have been to. The experience was so different, I wish I had a video camera to document our days there. We were free to leave the room with Faith when we wanted and hang out in the kids play area all day if we wanted to!

Beverly said...

Faith looks so happy and sweet in that photo!

Katy said...

Sounds like you had a great experience! Did you get my e-mail?

Candace said...

You all have me cracking up! Amy I am that way too. My big reason is because we take up so much room like you said, loading and unloading. I am always afraid we will hit someone's car with the chair or my door.