We learned early on in our journey with Sophie that her GI tract wasn’t “normal.” From the moment she was born we knew we were dealing with something. Many tests later and a few interesting and scary moments, we found ourselves learning words like dysautonomia, dysmotility, pseudo-bowel obstruction, running the bowels, G-tubes, central lines, and cecostomy.
Wow. This kid’s GI tract was her Achilles’ heel.
Born with a rare disorder, Hereditary Sensory Autonomic Neuropathy type 2, it’s hard to say why her GI tract was so affected. Others with her disorder have similar traits, such as not feeling peripheral pain (a hallmark of the disorder), but each person we have been in contact with presents differently. Each seems to have some organ issues, and the GI tract has some component to these issues. So rare, we were blazing a path of our own.
Thankfully, with much work, we found doctors willing to work with us to help this gal of ours.
Surviving GI Issues
So why am I writing this? Because I want you to know that you can do this. I have done this for over 22 years. Sophie was granted a life when she had a central line placed, along with a G-tube and cecostomy. The central line was to be temporary, to give her system a rest and to restart it, except the restarting process threw her into pseudo-bowel obstruction, when the intestine is unable to contract and push food, stool, and air through the digestive tract. Back in the day, there were not many options, and I’d like to tell you that you are fortunate to have those options today.
We felt fortunate for the knowledge that came before us, because if it had been 10, 20, or 30 years earlier, Sophie would not have survived. She is an amazing soul, a warrior in her own right. The number of times that we thought we’d lost her, only to see this fighter come back to live another day. And not just live, but thrive!
Years of watching her suffer were a lesson in love, perseverance, and hope for a better future. And it came. She is happier and healthier today than she has ever been. Most days I hear her laughter now. She is a ton of work medically, but we have found a way to fold it into the fabric of our lives.
I like to say that Sophie and I come from stubborn stock. Our determination has gotten us here, but we couldn’t have done this alone.
Lessons from a Survivor
You are not alone. Seek out others that can help you with this journey, whether it’s a professional that understands your family and the patient, or a close friend that just wants to help, or your tribe—those that follow or walk with you on this journey. Keep asking questions. Do not be intimidated by those who want to take over or derail you.
Here is a short list of what I wish for you:
Keep asking questions.
Give yourself time to absorb what you hear. Don’t always take the first answer. If it’s an emergency situation, give your best answer and realize that those taking care of your loved one are giving you their best answers.
Find your tribe.
Walking this life alone was not an option for me. It’s cliche, but it really does “take a village” when you have a child who is medically complex. Villagers come and go, and sometimes they come back. Sometimes those closest to you can’t handle it. That hurts. But I’ve learned to give them grace, or at least try to let it go. Your tribe has your back.
Sometimes the harder way is really the only way.
And that’s OK. You have to make decisions based on what you think is right for you and your family, and what is right in that moment. Others may not agree. It’s your decision to make. Do not let them take this right away from you. In the hospital? Get to know the patient advocate, whether you might need him or her this stay, or next time. No pun intended, but what does your gut tell you is right?
It sounds simple, but in heated moments it can be the hardest thing to do. Some of my most profound moments are when I had the courage to say back off—I need to think. When my daughter is ramped up, I step away (for a very short time) and then I take a yoga breath—this helps both her and me. I try to build moments to breathe into my day. I even have alarms set on my phone to remind me to take three deep breaths. Yes, another alarm to hear, but this one is for me. And it helps.
Central lines and feeding tubes are lifesavers, not the end.
Sophie has had a central line since she was three years old. She’s now 23. This has not happened without a lot of work, a few infections, and some crazy days in hospitals fighting for her life and her life-line. Treat it as such. The removal and replacement of a central line is the last resort. Some doctors and some hospitals do not adhere to this philosophy. Educate yourself if you find that a central line is needed. One great place to get lots of information is from the Oley Foundation. This organization is for individuals and families who get nutrition from an intravenous line (parental nutrition) or feeding tube (enteral nutrition).
Find what feeds you strength.
Meditation? Quiet contemplation? Prayer? Exercise? Socializing? Connecting with others like you? Sleep? Great food? Time? Yoga? Breath work? Let others give you the gift of getting one or more of these to feed your soul so you can go on being the amazing caregiver you are.
Some days will be hard, some will be horrific, some will be amazing, some will be your new “normal.” Rarely will you see a slow, quiet day. GI issues are tough to take and tough to figure out. Keep going.