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.
Hands up. Eyes closed. Twisting at the waist as if the top half of him was actually a washing machine agitator. Sunday morning worship is extra special when Matt is with us. Sometimes I just watch others watching him and smile. Other times I think “If they only knew what it takes on a daily basis to get him ready to go anywhere or how much pain he has experienced in the 15 years he has blessed us with his presence. Some would say, “Well, he doesn’t know any better.” I beg to differ. He may not understand it (neither do I for that matter) but he feels it. He doesn’t like it (see above picture) but he chooses not to let his circumstances steal his joy. Oh, if I could only live life the way he does-To be that strong. I think I would have checked out long ago. What joy he brings to others. I truly believe that is his calling. “Matthew” means “Gift from God” but it might as well mean “Acceptance with Joy”. But, as his mom, it is times like this that break my heart.
Another PICC line. Another g-tube stoma infection that won’t clear. Another round of IV antibiotics. A bowel that stops working no matter what I do with his diet. More unanswered questions. More decisions to make for him. Decisions that undoubtedly will involve more pain and more time away from home and school. I try not to question God but sometimes it’s hard. It’s hard when he’s in the hospital and is asking at least every 30 minutes to go home. Or, every weekday when he says, “Mom. Go school?” and I have to say “I’m sorry. Not today. You can’t go to school with a PICC line.”
I have read that, 90% of in utero diagnoses of Down Syndrome end in abortion. Some would use cases like Matthew’s as justification. Not everyone with Down Syndrome struggles with such complicated medical conditions. Many live long, happy and even independent lives. When Steve and I said no to the amniocentesis, we said “yes” to whatever God had in store for us as a family. I liken it to standing at the alter on your wedding day. You stand before God and man and make a vow “til death do us part”. Why? Because we have no idea what lies ahead. God doesn’t give us a crystal ball on our wedding day. If He did, many of us would never marry. And so it is with our children. Some come into the world healthy and stay healthy. Some come in healthy and get very sick or become disabled in some way.
So what do we do? Just as we would for any sick or injured spouse or child. We rise each day, ask God for renewed strength and deal with what’s in front of us. If Matt can take it, we can make it.
As Matthew grows it gets harder and harder to keep up with his calorie need without adding more formula. To complicate things more, in the last 2 years, his bowel has begun functioning much less efficient. Because of that I tested him for 4 days with coconut oil to make sure he wasn’t allergic to it. Once I saw that he was not allergic to it, I began making his oatmeal with fresh coconut milk I blend myself. Since I had already done research on it, I felt comfortable giving it to him. I will post that recipe and my recipe for coconut seed pudding soon.
Since there is a lot of confusion about the health benefits of it, I thought it would be good to pass on what I have read. I feel strongly in educating myself on anything I eat but much more so for Matthew. So many of us race off after every new “super food” that hits the news without looking into the particulars of it. I tend to look for articles done with research behind them and, because of my medical background, articles written by MDs. I know there are many doctors who are anti whole food healing but not all of them are.
I read this article about coconut milk and I felt it gave a good picture of the pros and cons of it. Take a look and decide for yourself.
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!
It’s been very busy here at the Barton home lately. Shortly after starting this blog we found out that Matthew needed major hip surgery. I was a bit overwhelmed by the news because the x-rays from the prior visit with the orthopedic surgeon looked great. On top of all the digestive tract problems, Matt also suffers from bilateral hip displaysia. That means that both of his hips dislocate. Because of their loose ligaments, kids with Down Syndrome are prone to it. We found out when he was 4 and he wore a brace for 8 years hoping it would correct the problem without surgery.
The brace did work on the right but his left hip continued to dislocate. So, at the end of December, Matt had his surgery. Unfortunately he was back in the hospital 1 week later with an infection in his hip because of his weak immune system. Now after 3 months in 3 different casts
and 2 months in a new brace, he is walking on his own without the help of the brace or walker!
Now if that weren’t enough, 3 months before the surgery, he began having major problems related to his Hirschsprung’s disease. In my next post, I will talk about what happened and share my green smoothie recipe that worked where Mira lax failed. Stay tuned!