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.

By The Time He's Two...

The day after the ultrasound that confirmed Kemper had Spina Bifida, we went to see Dr. Culler in Chapel Hill, NC. He had previously worked with the MOMS study in which the repair surgery is done in utero instead of after birth.Our Perinatologist sent us to him for a second look and he said the words that helped me pull my broken heart and shattered dreams back together.

"By the time he's two you may never even know he had Spina Bifida."

Not a guarantee, not a certainty, but hope to cling to that my baby would have a shot at typical.  Thing is, back then I didn't know much about Spina Bifida so I wasn't sure what I was hoping for. All I knew was that what the Perinatologist had to say had been the most frightening, disheartening, terrible future for our baby.

Turns out, that's pretty normal when you're delivered the Spina Bifida diagnosis.  I believe it's a combination of CYA (cover your ass) and outdated information.  It takes a very long time for the standard of care to change and for information to be up to date for doctors that don't deal with Spina Bifida every day.
Dr. Culler gave us a better informed, more realistic set of expectations because his career included ground breaking surgery on a fetus's spinal cord.  I'm not saying that's what it takes to get informed doctors, but it feels pretty close to that sometimes.

Anyway, let's fast forward two years.  Turns out that Kemper still noticeably has Spina Bifida and that is OK. Lots of things have changed, lots of things are better than we ever hoped, and I've made some fantastic friends in the SB community.  I will say this, Kemper has very high functioning for Spina Bifida, his lesion is sacral, and he can walk.  So, I suppose on the outside if you look at him, you see a typical child. But he's got a ton of stuff going on medically and developmentally.  Again, not as much as most kids with SB, but he's still got it happening.

I continue to digress.  My point is this, if you told me two years ago that there would be a point where I could cath him in an airport bathroom with people staring and not bat an eye, I would have called you a dirty liar.  If you told me that I would get through sending him to the OR 5 times without fainting, I wouldn't have believed you. If you said, you're going to get to the SB Conference and meet all these people who've supported you in your journey, I would have said Kemper was far too fragile to travel. He flew twice this year and took countless car trips with me. He fell on his face, slammed his fingers in doors, threw tantrums, and all kinds of other stuff too.

This is our life. Kemper is our world and he is living. Yeah, he's got Spina Bifida, but in a way, that doctor was right. It's not the first thing we think of anymore. Yeah he wears braces, yeah, he's got a shunt, etc, etc.  No big. I can't believe I reached this point, so I guess it is a big deal. I want all the newly diagnosed parents out there to know that this place exists.  I'm settling in and grabbing a drink with an umbrella in it, I'll see you here in a couple of years.  Until then, if you need me, I'm there.

                                                            Happy Birthday, Kiddo. :)

My First SBA Conference 2012

This year I was fortunate enough to attend the Spina Bifida Association's 39th Conference in Indianapolis.People have been abuzz in all the SB groups on facebook, including my group, Living With Spina Bifida. It's been a personal goal of mine to meet some of the delightful people I've had the gift of meeting in the online Mom and SB community. It was exciting to count it down with friends and talk about meeting up in the lobby. There were so many sessions I wanted to attend, so much going on, so many doctors and speakers and vendors. The Cincinnati Children's Hospital Colorectal Center was presenting and had a booth. A million medical supply providers for catheters and orthodics, different wheelchair vendors, the ZipZac chair, armtrykes, standers, service dogs, latex allergy groups, and so on. Jean Driscoll spoke at the celebration luncheon and she is an amazing athlete and speaker.  My homie Erica Hoke Potter won an award for her fundraising efforts for 4 before the 4th.  They shined the spotlight on some really awe-inspiring people who are doing important things.

This trip had me pumped. Super pumped! However, it was a journey fraught with trouble.  It was cancelled flights, bodily fluids, personal injury, and Hell on my back.  I could be heard saying I was never going to leave my house again after this trip.  Kemper is still out of sorts over a week later and missing a piece of his top front tooth.  Thankfully it's a baby tooth, but still, a chipped tooth.  I'm nursing a 2nd degree burn on my hand, and some of our clothes were thrown away.  I had a big stroller, diaper bag, cath bag, carry on, a suitcase, and my car seat.  It was ridiculous. And so hot, dude.  Crazy hot.

I'd go again in a heartbeat though. The bond between the people in our community is strong, for the most part it was like getting together with old friends.  The information and networking at the conference was absolutely worth the trip. Kids Camp was fanastical, the girls running it have a sister with SB. They were great with my son, and with the clingy Mom. (It was the first time I'd been away from him like that, c'mon, that was hard!) The tips and pointers and feeling of someone really knowing what your life is like and understanding how hard and how wonderful the day to day can be is so awesome that it makes me a little emotional. My heart was usually soaring or breaking, I cried a little, and I got some really solid information and feel like I have a plan for Kemper.  That feels freaking amazing.  It's like you're bursting with renewed energy to be home from conference.  You have all this information and data and know what you need to work on, and it's rejuvenating to the spirit to have that burst of steam to do something great for Kemper. It feels good to have a plan and goals and ask panels of experts questions and get answers and suggestions that are working.

If someone asked me if conference was worth the hefty tag of attendance, hotel, and airfare, I'd say without a doubt YES. Also, it's pretty sweet to stay in a swanky hotel and go to receptions and have wine and catered breakfast and lunch for a few days with some really nifty peeps.

Next year will be a little different with mini conferences, but I still plan on going to whatever they have, and participating in the SBANCSC Walk n Rolls this coming year. This is my cause and I have renewed vigor.

Dear Universe, That Horse Is Dead.

In other words, I get it.  I understand that you can't plan everything to the letter and expect it all to go off without a hitch.  I've gotten that lesson in spades by now and I think I'm learning to roll with what comes.
The thought that this is all preparing me for something bigger kind of makes my head hurt because I don't like it when plans go awry, but I'm trying to accept it.
Recently, my family had plans.  My sister had plans for a great summer with her family, enjoying the pool with her kids and doing what she loves, running.  Instead she had to have shoulder surgery after being injured by a student at the school where she works.  She's coping with a lot of grief in this situation, she is grieving her summer of carefree fun, her ability to be independent, her feeling of safety at work, her feeling of value from a certain co-worker, and more.  I can't begin to tell you how frustrated and upset I've been on her behalf, but that doesn't begin to cover what she's been feeling.
I tell you this because a couple of weeks ago, we had a big family vacation.  We do it every year, my sister and her family, my Dad and sometimes his fiance (she couldn't come this year) and my family.  This year, my sister had to sit in a therapy chair that did PT on her arm 3 hours a day while hooked to a tins unit.  This year, she had to ask me to put her hair in a ponytail, she couldn't hold her nephew other than posing for pictures, and she couldn't play with her children.  Maybe the Universe is taking her to school too, but I it sucks for her!  Because on top of that, we had an earthquake that shook the condo we rented and left us scrambling to get in touch with friends and family that were in the area where the quake hit.  Because if we felt it at the beach in North Carolina, we couldn't imagine what it was like where the quake was centered.  Thankfully, we reached everyone in great shape.
Kemper was great when we arrived, but no sooner had we unpacked he started getting sick.  He was congested and vomiting without a fever.  We treated him over the counter, but I have to admit, I was so happy it wasn't our carpet he was anointing, because it was nearly constant.  He improved over a couple of days, but we were new parent train wrecks.  Do we take him home to his pediatrician?  Do we wait it out?  We worried, fretted, took it easy with him, and worried some more.  Then all of a sudden, he improved to the point we thought we could just relax for the rest of the week.

Then... Irene caused some issues.  We had to end our vacation early because the island we were on was under mandatory evacuation orders.  My husband went home to our dogs and house, which was just out of the projected path of the hurricane, and I took Kemper and fled inland to a motel room.  I spent two nights there wondering if my husband and home and dogs were ok while trying to keep up with what the storm was doing.
Walking in the front door was so very sweet it competed with my return after seven weeks at Duke.  Home.  Ah.... a breather.  Then full force sick baby again.  He's been back to the doctor and had an Upper GI which of course, I have to wait through the holiday weekend for results.  Of course.
So in my defense, I'm trying really hard to roll with the punches and continue to throw the plan out the window, but it's not easy.  So not easy.