This week is a celebration of feeding tubes and everything they enable our tubies to accomplish. This year’s theme “Nothing Can Hold Us Back.” It’s a pretty accurate description – not only does Knox’s feeding tube not hold him back from anything, but it allows him to do so much more than he would if he didn’t have the tube. It has not been an easy road for us but the feeding tube has saved Knox’s life. And for that reason, we are thankful for it.
Knox is growing, thriving and loving life because his tube allows him to receive good nutrition. He goes swimming, plays with friends, jumps on his trampoline, runs fast, is smart, loving, laughs often, strong, throws epic tantrums, causes shenanigans, and does every single thing that a typical three year can do. And all because his feeding tube keeps him healthy.
Playing in the snow while being tube fed! Nothing can stop him!
His feeding tube isn’t the problem, it doesn’t cause him to vomit or have stomach pain. Quite the opposite. His feeding tube is our positive treatment that keeps him on the road to being healthy and thriving.
“Mama! I’m so big and stwong!”
The Feeding Tube Awareness Foundation has suggested a list of blogging topics for this week to help get the word out about feeding tubes. I will address some of them below.
We don’t let the feeding tube keep us hostage at home. We go everywhere we would if we didn’t have the feeding tube. Camping, the zoo, museums, shopping, daycare, work, car trips, restaurants, Greenbluff (pumpkin patch/fruit orchards), doctor offices, a wedding, professional family photo sessions, parks, our backyard, and many many more places. Anywhere that Knox goes, we can feed him. We aren’t afraid or ashamed in any way. Sure, we’ve gotten second looks and some people comment or ask questions but we don’t let the tube hold us back from going anywhere or doing anything.
Knox loves the water. It gives him great joy.
The feeding tube has allowed Knox to overcome many obstacles. His original diagnosis, “Failure to Thrive” at 15 months was quite a hard blow as a parent. It’s a catch all term that means a child isn’t following the growth curve. After that, he was diagnosed with gastroparesis, reflux and sensory processing difficulties. It was also discovered that his adenoids and tonsils were far too large. He has endured around the clock vomiting (a six month long nightmare that has thankfully abated), granulation tissue, stomach pain that we can’t even quantify, surgeries, numerous testing procedures, long car rides to Seattle for medical care, anesthesia, traumatic IV placements, MRSA, disrespectful and uncaring medical providers (these were few), and much more. More than any one person should ever have to endure in a lifetime, let alone by the age of three.
MRSA topical infection
The “Failure to Thrive” diagnosis still follows in his medical records even though he is so far from failing to thrive. He is, indeed, absolutely thriving right now and all thanks to his feeding tube. I consider “failure to thrive” to be a diagnosis of the past that Knox has conquered. He still suffers from gastroparesis and its unpredictable patterns but the feeding tube allows us to give him a healthy liquid diet that his stomach is able to digest efficiently. Without the feeding tube, he might have eventually died because his stomach and intestine simply cannot handle solid food in enough quantity to sustain him.
Knox has also overcome significant vomiting. It’s hard to explain how bad this really was for us. Most people can’t imagine a two year old boy vomiting 5-10 times a day, every single day for months on end. And I’m not talking about spit up. I mean forceful, projectile vomit that completely emptied his stomach. I’ve had seasoned daycare workers tell me they have never seen a child vomit with the force and volume that Knox can vomit. Watching our baby go through this was heartbreaking. On a more selfish and practical standpoint, it also caused significant sleep deprivation for Chris and I because the best time of day to vomit is of course at night. We were walking zombies. Some days, we probably weren’t safe to drive because of the sleep deprivation. We stored the carpet steam cleaner in Knox’s bedroom so it was ready to go at all times. All of our bath towels have endured endless vomit and bleach cycles in the washing machine. I can’t stress enough how awful this was. Thankfully, Knox has grown out of this (knock on wood). He still vomits far more than he should, but it isn’t everyday anymore. We probably average once or twice a week. The triggers tend to be pump feeding mistakes (giving him too much), illness (any and every bug causes his motility to tank) and still a bit of random that can’t be explained.
Hammering while tube feeding
There are challenges that go along with tube feeding. Putting the medical stuff aside, tube feeding does require some extra tools and tricks. For example, Knox’s feed rates and volume is controlled by a pump. A mechanical pump controlled by an electronic panel means that we don’t always communicate very well. The pump is very finicky about what we put in it, the position of it and the feeding bag/delivery set and sometimes finicky about nothing in particular. It alarms often. We have a love/hate relationship. We (and anyone who cares for Knox) have had to become a magician at fixing pump alarms. We have to read Knox’s cues to figure out how fast and how much his body can handle to maximize digestion and avoid vomit. Sometimes we fail and end up with epic projectile vomit. There are also tons of supplies – feeding bags, multiple types and sizes of syringes, extension sets and cleaning materials. We have to store all this stuff somewhere in our house. Sometimes it feels like we are being overrun. We have figured out a system and also have started culling things we never or very rarely use (ten inch long q-tips anyone?) so we are starting to get the medical mess under control. Since we don’t use formula much anymore, that has alleviated space issues – a month’s worth of formula takes up quite a bit of space.
Another challenge is battling granulation tissue. This is when the body attempts to “heal” the stoma (hole) by growing tissue around the g-tube. This extra tissue is painful and bleeds. There are a handful of ways to deal with it. Doctors tend to prefer silver nitrate sticks. This is a very painful method that “burns” off the unwanted tissue by cauterizing it. It is fast and effective. But it hurts and doesn’t do anything to prevent tissue growth. (Even though one Spokane GI tried to tell me it doesn’t really hurt and Knox was just getting worked up for no reason. %@&^*.) I hate doing this to him and so we really only use it if the tissue is out of control and nothing else works. We typically use a topical steroid cream and that works most of the time. In our case, I’ve found it works best when used a tiny bit everyday to prevent growth in the first place. It’s a little controversial among our providers because some of them don’t think it’s safe to use daily. Others do. Right now it’s a moot point because his stoma is really great right now – not growing much tissue at all so we can use the cream on an as needed basis.
At the mall while tube feeding. On the “ex-ta-later”
Some challenges we have overcome, and others we are still battling. What helps us get through these challenges is patience, our son’s resiliency, each other, trusted medical providers and more patience.
One more thing that helps me significantly. I can’t deny that my son’s feeding issues have not taken an emotional toll. Being unable to feed your child, being told your child is “failure to thrive”, making the choice to place a feeding tube and using formula for years takes a very real toll on a mother’s heart. I have missed out on preparing him healthy and not so healthy fun foods and feeding him/watching him eat. We’ve never shared a brownie batter mixing spoon. He’s never eaten birthday cake. One way I have managed to gain back some of that sense of purpose and including him in our family food experiences is by blending his liquid diet instead of using instant open formula. I am able to give him the healthiest possible foods – foods that most people (let alone toddlers) don’t eat on a regular enough basis. I can also include him in the not so healthy splurges that we all take advantage of – for example I blended a small slice of his birthday cake. He often gets the same meals that we eat. On a daily basis he “eats” spinach, quinoa, flax, coconut oil, full fat plain greek yogurt, nutritional yeast, blueberries, kale, peaches, mangoes, hard boiled eggs and much more. It’s a very balanced and healthy diet that has enabled him to thrive. When we first started the blended diet, he gained a significant amount of weight in just four weeks after several months of stagnated gain on formula. Preparing his blend is a boost for me as a mama.
A batch of blend. Beets make it pretty! I love my Blendtec! Could not Now if I could just get the Wildside Jar for double batches…
This year, in 2014, I have hope that Knox will continue to grow and thrive. If that includes the feeding tube (and it likely does), so be it. I could say I hope we can get rid of the tube. It would be great if he could eat all of calories, drink all of his hydration and take all of his medications orally. But that is not realistic this year. And I’m okay with that. We are thankful for the feeding tube that has given our son his life.
I love a tubie!!
This week has been really active all over the web with tube feeding success stories. Scrolling through the FTA Facebook page has been comforting and uplifting. I have also participated in FTA Week by writing a couple of guest blog posts for other blogs.
I wrote a post for Liberating Working Moms, a blog focused on issues relevant to moms that work. My guest post focused on being a work outside the home mama with a son that has a feeding tube. Read it here.
I wrote another post for Mama By The Bay. Her blog is absolutely beautiful. She often writes about issues surrounding how we feed our babies and supporting women with whatever choice they make. Last year she and several other bloggers sponsored the I Support You Movement, a celebration of feeding with love. I asked her if she would feature tube feeding on her blog as another way of feeding with love and she graciously and gladly obliged. Here is that contribution.