*Fair warning: When I
say this is a crappy disease, I mean it. Literally. This post is mostly about
poop and how our life, Jett’s life (my 3 year old) revolves around it. I will
share the perspective I have gained on caring for a child who is sick, as well
as go into detail about his disease in an effort to bring some awareness to his
condition.
A
few days ago, we celebrated Mother’s Day. To me, Mother’s Day is not only a day
to celebrate the mother’s in our lives, but to celebrate being a mother. I
think of each of my children and am filled with joy and gratitude for the
opportunity I have to be their mother. Being a mother is H.A.R.D. work!
Although each day isn’t filled with gum drops and rainbows, each day truly is a
gift. Some of us mothers know all too well how quickly that gift can be taken
from us. How the light of life can be snuffed out too quickly, too soon.
Mothers who care for a child who has special medical needs know this truth all
too well. It is a unique and terrifying experience to have a child who has been
ill and almost died. For some, it is an isolated event that you can move past
once it resolves and your child is healed. For others, it is a daily battle to
keep your child healthy. Either way, once you experience it, it changes you-
forever. Nothing can give you more perspective on life than the threat of
losing a life. I applaud all mothers who make sure not a single stone goes
unturned, who work tirelessly to make sure their child has every opportunity at
having the maximum health their bodies will allow. It is a difficult,
emotional, and often heartbreaking road on which we travel.
As
a mom, I have done things I never imagined when I would daydream about
motherhood. As a mom to a child who is
sick, (by the way, I prefer to say “a child WHO is sick,” as opposed to “a sick
child.” The same way that you should say “the man who is paralyzed,” not “the
paralyzed man.” My child is first a child, who happens to be sick. Moving on…)
however, I do things I couldn’t have even fathomed!
My
son has a bowel disorder. My senses have been numbed and I have forgotten that
there is such a thing as “too much information” when it comes to talking about
pooping habits. Sometimes I forget that not everyone is interested in hearing
about my toddlers poop. Oops! Seriously though, all you mothers of
regular-poo-pooing children don’t know how good you have it! I have been known
to:
* smell my child’s poop and think
it smells “good” (as opposed to infection-laden smelling poop, a sign something
is seriously wrong),
*video tape my child pooping as
encouragement for him to “push it out so he can watch himself later”
*dramatically fall on the floor
just to make my child “toot” more,
*ask my neighbor (bless her
heart!) if my child can poop in her toilet because he won’t poop and we are
desperate to do anything that will get him to go.
*Say things REAAAALLY
enthuastically, like it is the best thing EVER such as “Jett! Do you want to
poop at the Aquarium? Sooo exciting! Come on!” “Oooo! Let’s poop at the
Library! The grocery store! Church! Yay! How fun!”
*Be terrified, because I have
lost Jett at the library and have everyone searching for him, only to be found
by a librarian in the bathroom with poop ever where! Jett’s response at 2 ½
years old? “I had to poop weally, weally, bad Mom!” I was equally relieved that
he was found AND he had pooped. Dodged a few bullets that day!
I
will begin Jett’s story where it started, in the womb. When I was pregnant with
our 3rd child, we found out at the 20 week ultrasound that his life
was in extreme danger. There was a problem with the womb, part of the amniotic
sac had separated, and fallen, like a sheet, on top of our baby. The risks were
anything from webbed fingers or toes, to deformations of the skull/brain, to
self-amputation of limbs and…death. The remaining months of my pregnancy was
like a roller coaster. I knew that my child’s life was in the Lord’s hands. Although
this dilemma had nothing do with his eventual Hirschsprung’s diagnosis, it
played an important role in my life as a mother, shaping my viewpoint of how
each day I have with my children is a blessing, and a gift from God. It was the
first time that I felt the delicacy that life truly is. 17 anxiety filled weeks
and more than 20 ultrasounds later, our perfect baby boy was born into this
world, unscathed by the band that threatened him inside the womb. It was a
miracle, given by God. We knew it, and the doctors knew it.
Fast-forward
4 days. We found ourselves in the Neonatal Intensive Care Unit, with our baby,
who was placed there initially for his inability to maintain his body
temperature and had a swollen leg (both issues resolved on their own within
hours) but he was kept because he refused to eat and was force fed by an NG
tube. The neonatologist told us he hadn’t pooped in more than 24 hours, hadn’t
returned two suppositories, and his stomach was extremely distended making him
at risk of perforation of his bowels. My husband and I waited on pins and
needles for the EMS transport team to arrive and take him to another hospital
that had the doctors he needed. We watched as the paramedics loaded him into an
ambulance and drove away, without us. A few days later, we received his diagnosis:
Hirschsprung’s
Disease (HD). Never heard of it? Neither had we. HD is a disease in which
ganglion nerve cells in the colon are absent, leaving parts of the intestine essentially
paralyzed and causing an inability to poop.
*Jett @3 days old, prior to any
knowledge of a bowel problem
At
10 days old, he had a surgical “pull through” procedure that removed the
diseased intestine and then pulled down and attached the functioning intestine.
Although surgery removes the diseased portion of the bowel, it is not a cure.
There is no cure for Hirschsprung’s. Luckily, most cases do not require much
care past surgery. Unluckily, a small percentage of children still experience a
great deal of suffering, despite the operation. Jett does not suffer from the
majority of these problems, but for some it may include repeated infection,
chronic constipation, chronic pain, additional surgeries, strict diets,
incontinence, delayed potty training, ostomies, medications, botox injections,
irrigations, multiple hospitalizations, bowel management clinics, etc.
*Jett @5days old, pre-diagnosis
Jett’s
surgery was very successful, and 99% of the time we do not have problems. Every
day, however, we do take measures to ensure that he stays healthy. All we have
to do is make sure he poops. Easier said than done though! If you’ve ever tried
to force a child to poop, you know that it can be tricky. I’ve had days where I
wondered how I would get Jett to poop the next day, because I was completely
out of ideas, but somehow, the next day would come and I would have a new
creative way to get him to poop!
When
he was a baby, he pooped 10+ times a day and all we had to worry about was
managing his severe diaper rash (which is a common problem with HD). At 21
months old, however, things changed and he suddenly stopped pooping, stopped
eating, vomited continuously, and became very lethargic. He was hospitalized
and treated for enterocolitis, a very serious infection that can lead to
sepsis, perforation, and death if went untreated. Enterocolitis is the leading
cause of death for HD patients.
Just
today, while Jett sat on the toilet downstairs, I sat on the toilet upstairs
and we had a race to see who would push their poop out first. Yeah. I know.
It’s weird. And if you know me, you’ll probably never look at me the same way
again, but desperate times call for desperate measures! At any given moment, we
figure Jett has about 3 days before he will become critically ill and need
invasive, traumatic treatments and hospitalization if he doesn’t poop. We will
do ANYTHING to keep him from getting to that point, although sometimes it is
still out of our hands. If Jett hasn’t pooped, by day 2 his belly is distended,
he complains that it hurts, and his appetite diminishes. By the end of day
three he is vomiting and lethargic. We never wait that long to take action
though. By the end of day 2, we are usually irrigating his colon and manually
getting the toxic poop out ourselves. If we have to do more than three
irrigations we have to call his surgeon. If Jett is already lethargic,
vomiting, and feverish we would need to take him to the emergency room.
*Jett
@21mos. Leaving for Baltimore via ambulance *Jett @27mos. Being treated for
enterocolitis
Treatment
for enterocolitis includes strong antibiotics, being hooked up to a suction to
keep all gastric juices out of the gut, and irrigating the colon. Irrigation,
especially when done in the hospital by the surgeon, is hell on earth. I hate
to say it, but whenever he has to have it done, although it is very crucial to
his well-being, I feel like he is being assaulted. And worse, I think he feels
like he is also. It involves a catheter being threaded into the intestine via
the anus and saline being pumped through it in an attempt to “wash out” the
colon. A dilator (rod) is inserted and, while applying a great amount of
pressure on the abdomen, is taken out, forcing stool and fluids to come out. If
enterocolitis is present, the stool often comes out in a sort of “explosion,”
peppering anything within a 5 mile radius (and the answer is YES! Jett has
nailed the doctors and nurses present in the room before!). Repeat multiple
times a day. Might I add that several adults are needed to hold him down, and
he will not only scream and cry during it, but also for a long time afterwards,
and won’t let anyone touch him. It is
because of the risk of enterocolitis that I will do absolutely anything to encourage
Jett to poop.
Through
our experiences, I have had countless people tell me how “strong” I am. I
cringe whenever someone says that to me, because I know it is not true. I am
not strong. I am weak. However, I have
come to rely on the scripture
Philippians
4:13 “I can do all things through Christ, which strengtheneth me.” It is
because of Christ, because of his atoning sacrifice, and His ability to know
perfectly how to comfort and sustain me, that I have been able to continue on,
in faith, during difficult times.
*Jett @ 3 years old
Am I
grateful that my son has this disease? No. Of course not. Am I grateful for the
things that I have learned along the way? Absolutely! Perhaps if I could see
“the whole picture” I would be grateful for the disease too. After all, I do
credit his Hirschsprung’s with saving his life when 3 months old and had severe
RSV. His Hirschsprung’s got him to the right hospital, with the right doctors,
at just the right time, before his condition became critical. What if he hadn’t
of had HD? Would he have received the care he needed in time? I really don’t
think so, but that’s another story. What I do know, is although I am weak, my
faith is strong. Despite sometimes having walked into the hospital and being
unsure if we would walk out again with our son, despite those times of
uncertainty, I am continually comforted by the knowledge that
families can be forever.
Each of us as mothers will face our own challenges and difficulties on this
journey of raising our children. May we each take the time to relish in the joy
that it is to be a mother, even when we want to lock ourselves in the bedroom
because our children are driving us completely insane. If you made it to the
end of this post, I thank you! May your days be filled with happy pooping and
bum wiping!
