Ever feel like this guy? I have and quite often lately. After developing The Poopinator I was sure Matt’s problems were over…and for a while they were. Slowly it stopped working. Before I knew it, Matt was back on Miralax and then some. Each additional medication and technique would work for a while then stop working. At one point I told his GI doctor in exasperation, “I feel like I am doing CPR on his colon all day long!” The terms appendicostomy and colostomy began to circulate and I became worried. How could this be? He’s super hydrated and has the cleanest most fiber filled diet of anyone I know. What am I doing wrong? Answer: Absolutely nothing. Even the best blenderized diet can’t fix a mechanical problem.
Eventually he ended up back in the hospital for yet another clean out. I needed answers to questions that sometimes even doctors can’t answer. My thoughts became filled with “What ifs?”. Further tests were done that showed he did not have a specific area that had stopped working but that he was slow over all. So we left the hospital cleaned out and back to square 1. If the current regimen fails then we will have to carefully consider what is best for Matt. Even though the test didn’t show something that was an easy fix, I still feel better. Knowing is way better than not knowing. Now we can move forward to whatever the future holds for him. And always, I pray and hope. God had a plan for Matt’s life when He placed him in our family (Jeremiah 29:11). My job is to make that life the filled with as much quality as I can.
So, since quitting is not an option, I will blend on while listening to my new anthem “The Comeback” by Danny Gokey. Feeling defeated today? Click, listen and be revived.
I got a message from a dear friend today. I say friend but she’s more of a sister to me. So many times I have called on her for prayer and support. So many times she has been there for me. Being an amazing NICU nurse is a bonus. I can only imagine how the parents of the sickest of babies feel when their precious angels are in her care. She has the uncanny ability to know when I am hurting even when no one else does. Her looks and hugs speak volumes while her carefully chosen words are condensed libraries. In my experience, she is a rare gem… A medical professional who gets it. In the 25 years that I worked in the medical field I got to see first hand those who stand on both sides of that fence.
But now, as a parent of a medically complicated child with special needs, I see it from the other side of the desk. I understand on a deeper level the frustration expressed by the patients I dealt with. Much of my time now is spent fighting a system that is caught up in codes and protocol to the demise of common sense…Fighting for what is best for my child. Thankfully, Matt has a great group of doctors who listen and are open to my input about his care and are just as frustrated as I am when we hit a road block. Many of you who will read this are not so fortunate. My heart goes out to you but I am here to encourage you not to give up and not to give in.
So when her simple message read, “Sound familiar?” I knew I had to stop and read the story she had tagged me with. As I read through “Kate’s Story” I couldn’t help but feeling it could have just as well read “Matt’s Story” and I felt a kinship to the family. Then I found myself becoming angry. More like frustrated. Real food for real kids. What a concept! So why do so many of us find ourselves bucking a system that is supposed to want the best for our children? Do doctors and dieticians wake up each day and say, “Hmmm. I have 50 kids to see today. Let me see how I can mess them up.” Certainly not! The doctor’s and dieticians that have spent the last 15 years helping keep Matt alive are not ill willed. Many are simply uninformed. Others simply lack the time due to huge case loads. Still others find themselves with their hands tied thanks to a healthcare system that has become more about making money and less about caring for patients.
So where does that leave those of us who have the gall to insist that our tube-fed children and loved ones deserve and desperately need a diet that consists of real food? In the battle, for better or worse. We keep fighting, educating and spreading the word. When it comes to blenderized and pureed diets for people with and without g-tubes, we can’t quit even when we feel we’ve hit a wall. Our loved ones often can’t advocate for themselves. We must be their voice. Matt has been blessed with an amazing GI doctor. She has seen what a whole food blended diet has done for him and other patients she has referred to me for help. She too wants better nutritional options for families. But, to paraphrase a comment she made to me one day, the healthcare system today is a large ship and we are the rudder on that ship. If we simply hold our position for long enough, the ship will turn. Ever so slowly and often without notice. My hope and prayer is that our voice gets so loud that big companies that sell fake nutrition for a profit will crumble and fade away. Until then we will just keep doing what we do best…Loving. Caring. Sharing.
When you get a moment, read Kate’s Story. It will both encourage and inspire you on your journey.
What do you do when you’ve done all that you can and your tubie needs a clean out anyway? All of the blending and adding and removing and…SO MUCH GREEN STUFF! Well… You just keep swimming, right? That’s what Dori did. Yes, finding Nemo is one of Matt’s favorite movies to this day even though He’s now 15. So amid the overwhelming feeling of defeat,exhaustion worry and fear I hear that song ringing in my head. Oh how I wish it were that easy. Matt has had GI troubles since he was 8 months old. I’ve been at this for 15 years. Shouldn’t I be use to the ups and downs of this tubie roller coaster by now?
But, as we all know, that is not the case. Putting up with the pain and discomfort or watching someone you love go through it is never easy. So whether you are a tubie yourself or the caregiver of a tubie, a newbie tubie or a veteran tubie, please know that you are not alone. Find a support group if you are not in one already. They are indispensable! Where else can you go and talk about poop and vomit as if it were the weather. We get each other. No need to explain, defend or excuse. Just take a breath and…You guessed it! JUST KEEP SWIMMING!
Yes, even veteran tubie moms can struggle from time to time. Matthew can’t handle large volumes because of his slow emptying issues. He is a growing teenage boy who is now more active than he’s ever been in his life. It has been quite a challenge getting him the additional calories he needs without increasing volume. Recently I had to add another carton of formula to his daily routing because his weight was dropping. I have been hesitant to try coconut oil and/or milk because of extreme food allergies in the family. For years I have been making his oatmeal with formula. Helping a transitioning little one has given me the courage to try adding 1/2 tsp of organic coconut oil in his immune system cocktail (given through the g-tube) to see how he reacts. It’s been 2 days and so far so good. If he continues to show no allergic reaction I will make his next batch with fresh coconut milk instead!
Matthew's Manna 