Sunday, August 17, 2014

Success Maybe

A little over two years ago I found out about Cincinnati Children's Hospital's Colorectal Center and their Bowel Management Program. Since that day I have done tons of research, made a plethora of calls, chased nurses down at a conference, and asked a million questions of parents who have already taken their child for this program.

The past two years have been full of anticipation for this program, which touts a success rate of over 95%, which comes so highly recommended by other parents. Finally, Kemper was old enough to make the trip and do the program and I couldn't have been more excited to see a light at the end of the tunnel. This program is not advertised to the Spina Bifida population because they could not handle the sheer volume of people. I could not believe it. I felt so fortunate to have the contacts in our community that I do.

To put this in perspective, Kemper is at potty training age and having spina bifida can mean that's not really possible. While I feel like this is a very important issue to address, it's not one that people like to talk about, and Kemper deserves his privacy. So I'm trying very hard to talk about this while preserving that privacy for him.

We packed up our bags and flew out last week, met my mother in law, Melody, and checked in to our hotel. Kemper loved the people at the airports. He loved the people at the front desk. The next morning, he started making friends with everyone he met at the hospital. And what a hospital it is! It's a massive hospital with modern everything, the most friendly staff, the most smoothly running, and the best child life team I've ever encountered.

Our first day, Kemper had to do the hard stuff, blood work and the contrast dye study of his colon. There was a Child Life specialist with him the whole time, and she made this test so much easier. **Here's where I say, parents who want more info on this process, pm me on facebook, because this is where it's a more private issue.**  He also had an ultrasound of his bladder and kidneys, but that's cake, comparatively. The woman that did Kemper's blood draw was the very first person to ever get a successful needle stick on my child on the first try. From placing an IV to every single blood draw, everyone, even the teams at Duke, have needed multiple sticks. I had to make a rule, you get one shot in each arm, if you can't do it, we'll come back another day. I wanted to smuggle this woman home with me. Everyone we encountered from the valets to the ultrasound tech was just as friendly and helpful as you please. Kemper introduced himself to the entire radiology team and we all had giant smiles on our faces.

The next day we attended a seminar conducted by Dr. Pena and Dr. Reddy. Kemper got to go to a room staffed by child life while Melody and I attended. Both men made several of us parents break down into tears of relief and hope. Personally, I finally felt like someone understood the struggles faced by a child with these kinds of issues. The kind of care this hospital strives for is care for the whole child, the disciplines work together and create a plan of care for your child. They said aren't treating a colon, a set of kidneys, or a bladder, they are treating a child and that alone was enough to make a desperate parent explode into tears.

This program doesn't make the kind of money a surgery to re-route the colon or bladder into a stoma would make, takes much longer, and isn't terribly scientific. But why do surgery if you can get this program to manage the issues? Those are the words of Dr. Pena and I swear I could mouth kiss that man for saying it. After the seminar, a nurse gave us a demonstration of all our supplies and talked to us about the giant binder we'd been given. We were instructed on how to administer, avoid issues, and track progress, because you fly solo for the weekend. It gives you and your child an opportunity to try things out and get used to the process. This is no picnic for a three year old, or any small child. The whole process takes an hour, and 45 minutes of that is sitting still.

Our weekend was fairly successful, and I was so thankful Kemper had his Grammy there to help us. We were able to do some fun things to make up for the not so fun stuff.

After Kemper got a belly X-Ray on Monday, we met our nurse practitioner, Ebony Moorefield. Can I just pause here to tell you that this woman is amazing and I also wanted to smuggle her home with me. She's personable, listens without interrupting, and has a palpable compassion. She talked to us at length and we came up with a plan to tweak our program.

Each morning that followed, we repeated the X-Ray and our meeting with Ebony. Over the course of the week, I'd say we were 80% successful. We didn't leave with everything perfect, and while Kemper is doing so much better, he's still wearing a diaper for now. That's ok, though, because we will be closely in touch with Ebony and should we experience any real problems, our local pediatrician will get an X-ray and send it to her via email. I had to email Ebony while we were still in Cinci and it was less than 10 minutes before I got a response. Can you say WOW?

We saw Urology Friday morning before we flew out and discussed his kidney reflux, and I feel like CCH would not take the same "laid back" approach of Duke to wait and see how his kidney does. Dr. Reddy actually talked about how your kidneys work until they are in such bad shape they are close to failure. I don't want that to happen to Kemper.

We were able to meet and have group time with the other parents who were attending as well. We heard some horror stories and we heard some uplifting stories. Two couples brought their children from India, some didn't speak English, everyone traveled a great distance to be at CCH. There were four kids there with Spina Bifida, some with Imperforate Anus, hypermotile colons, and Cloacae. We all wanted better for our kids and we all have high hopes. Kemper and I got to spend a little time with the other SB parents and kids, I'm so happy we did, they are wonderful families.

So basically, I'm ready to give up my life near the ocean and move to Ohio just to have constant access to this facility and all the wonderful people that make it so great. I've never felt so reassured by the care Kemper has received, I don't say that lightly either, because our team at Duke has been fantastic. They just can't hold a candle to our experience at Cincinnati.