Another mother on one of the Facebook pages I'm a part of recently posted this. If we could somehow give this to all of Eli's doctors.... As a parent of a child with multiple health issues, you get accustomed to going from one doctor to another. And, unfortunately, you also become accustomed to being told, "Well, we need to refer you to....", "I don't know....", or a long drawn-out explanation full of medical terms we don't understand. We've also become accustomed to the sighs, the eye rolls, the irritation in the nurses voice when you call to ask another question about a rash, a leaky tube, a medication...... I understand these doctors see multiple kids a day. I understand this is routine for them. But this is not routine for me; this is my child who is sick and literally CAN'T eat. A fever to him could result in late-night ER visit or a lengthy hospital stay, more lab work and tests, more medications..... If doctors could, just for a minute, see it from the perspective of a parent. Lauren Sellers, out of her own personal frustrations with her child's doctor, composed this letter with the help of other parents of medically fragile children.
Parents of Tube-Fed Children Ask This of You…
By Lauren Sellers, with the help of over twenty moms of tube-fed children
1.
Consider what our daily life as the parent of a tube-fed child looks like.
Many of us arise at a ridiculously early hour in the morning to the incessant beeping of a pump, a child crying because a tube detached and they are covered in stomach contents or a wet bed after diaper leaks. Buttons pop out, or are sometimes ripped out. After a rough morning, our days do not get any easier. Michelle Wilson describes it well by saying, “Almost all day long, all we think about is how to feed our child, how much time will it take, how much to give, how fast or slow to give it, can they handle this volume, are they growing, can I feed them this...oh how I wish they would just eat.”. We cannot simply throw some diapers and some snacks in a bag and walk out the door. Preparation for everything is an exhausting process. And if we are desperate for just a little time to ourselves, we have to then rely on family and friends, who often have no idea how, or are too frightened to watch our medically fragile children. The stress from never getting away from all things medical puts a huge strain on relationships with our spouses especially. We do not have any time together, without the discussion of medical supplies, hospital visits, bowel movements, fights over feedings, vomiting, and other less-than romantic topics. Financial struggle is also a big issue with most families. Formula and/or special foods are not always covered by insurance, along with extra supplies like protective belts, spare buttons for emergencies, and back packs that make our life and theirs easier. We spend money on gas for every trip to the doctor’s office or hospital, parents miss work, and other family members do without as well. Having a tube-fed child is taxing in many ways.
2.
Inform us in a compassionate manner.
We know you are the experts, which is why we come to you. Please do not speak to us as if we were a nuisance. We know that you see a lot of kids. It’s not as if we take joy in calling your office and listening to all of the extension choices, just to be sent to your voicemail. We only call when we have a valid concern about our child’s health, so please take the time to address our concerns in a timely manner. As Lisa Cavitt points out, “This is a living breathing human being I am pumping fluids into, and if he/she is getting sick every feed, or has a rash or discoloration, or a leak, to me, it is serious because it is not normal, and the minute I assume I know what I'm doing and I hurt her, it is ME that has to explain to [her] why I did what I did.”
We would love to have a happy, symptom-free, tube-free child that no longer needs your services, but until that day comes, it would be great if we could work together as a TEAM. Katrena Lee wants you to know that, “This is TOUGH for us…be kind, compassionate and understanding. Help us work through the issues with you.” Our children are not milliliters or ounces, so talk to us about the overall health, and goals that we need to achieve, not just about numbers. Every child is different. And sometimes, even when we follow your orders meticulously, our child will still refuse to eat anything, and while that may be upsetting to you, it is devastating to us! Please do not assume that if a child is not gaining weight, it is not because we are not trying every last thing we can possibly think of to coax them into taking one bite. All any of us want is for our child to grow and be healthy.
3.
Trust us.
We know our child better than anyone. We make the choice to come to you because we trust you will do your best for our child, so trust that we also have our child’s best interests in mind. Trust us to make good decisions for our child, and help us if we are having trouble. Please have respect for parents dealing with feeding issues 24/7. We do know what we are talking about. Our life revolves around each calorie consumed. We know what food our child can, and cannot tolerate, or will even try. When the time comes that you do not know what’s best, listen to us. In many cases, we have to figure out many of our child’s issues on our own. Don’t judge us simply by our reactions. None of us dreamed motherhood would mean sticking objects into a hole in our child’s stomach, treating wounds, draining stomachs, venting, or flushing. Our laughter may come from our uneasiness in the situation, or our apparent lack of emotion might come from chronic fatigue. We go through a lot more than most parents ever will, and we are tougher for it. Just because we act one way in your office, doesn’t mean that we do not scream in our car after an appointment, or cry once our child is asleep at night. Our child is always our top priority.
4.
Remember that tube feeding is not all bad.
As I have explained at length above, there are definite negatives to having a tube-fed child. But when we do see our child finally have the energy to run around our yard, not cringe over the thought of food that hurts to eat, finally start to catch up developmentally, return to their “old self” (as I have seen with my son), and in other children’s cases, stay alive, we are so incredibly thankful for those tubes. We all hope to get rid of the tube one day, and we work hard with doctors and therapists to do so, but we ask that you still remember how much tubes improve the lives of those that need them.
