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.
