Ruth's family isn't letting TPN hold them back

HAILEE: I've lived my whole life totally blind. Ray is partially sighted so that means he can see a little bit. I always say well enough to ride a bike.

SCREEN: Hailee and Ray have a two-year-old daughter who requires Total Parenteral Nutrition (TPN) for her daily nutrition intake. 

RAY: We have 4 kids, Faith, Joel, Ruth and Rachel.

HAILEE: We're a close knit family. We stick together and we help each other out.

RAY: It was very exciting. When Ruth was born, she was just like any other baby. There was no obvious sign that something was going to happen down the road. And then she got a little bit older. She started having digestive issues and we had to take her into the hospital for the first month and 1/2 that she was in the hospital, my two older kids stayed with my mom. So that way both me and Hailee could be there at the hospital with Ruth and try to get things figured out. It was scary and the hardest thing is just not being able to see the end in sight. The hospital started doing testing to figure out exactly what the diagnosis is and that's when they came up with chronic intestinal pseudo obstruction.

HAILEE: It was decided after some time that she needed to be on TPN.

SCREEN: TPN is the feeding of a person intravenously, bypassing the usual process of eating and digestion. 

HAILEE: We had to really talk about the ups and downs of what life with TPN would look like.

RAY: I didn't put a whole lot of thought into it when the other company said they couldn't do it because it felt like it was just another one of those setbacks that you almost come to expect.

 
HAILEE: Honestly, I don't think that they believe that we could do it. But when Coram came into the picture, they had a lot of confidence in their abilities to be able to train. 

RAY: Coram sent one of their nurses to our hospital room two or three times a week, and she would just work with us. Here's the parts, here's what they look like, here's how they go together.

HAILEE: They taught us properly how to be aseptic, use proper technique so that way we wouldn't contaminate the line. That was the biggest worry that they had is consistency and making sure that, you know, we were keeping her safe.

RAY: Instead of justice visually showing how it's done, they had actually us practicing it.

HAILEE: I just really appreciated her hands on approach and her explaining step by step how to do things. The whole system just made both of us feel like we had the confidence to take care of this Coram. They keep track of where she's at. They keep track of her status so that way they can tell what her needs are at any point. They know exactly what TPN we're using, they know what pump we're using. They know everything of how we're set up. If it's a troubleshooting with the pump, then they'll walk me through that. If it's something with her line, they can even help with that as well. They're really supportive.

HAILEE: I would say it's like Quorum and their staff is like family and they call you every week. They ask you what you need, what supplies. Especially the pharmacist. She's really friendly. She'll ask me how I'm doing. So I feel like there's also personal touch that they provide. 

RAY: I'd say Ruth is doing amazingly well. She's gaining weight like she's supposed to. She's full of energy, full of life.

HAILEE: I do know that she will accomplish many things, and we always joke around that maybe she'll become a nurse or a doctor.

RAY: What's most important is that she has a great quality of life. I don't want her to miss out on opportunities. I don't want her to be defined by her condition.