This post has been really hard for me to start writing, I think because
in some ways I still cannot wrap my mind around everything that has happened in
the past six weeks. Several people have asked about what took place and have
seen vague Facebook posts, so I thought it’d be best to lay it all there and
tell the whole story.
Our last post saw us both doing really well, we had just come back from
a cruise with our families, our weight had stabilized, we were both eating
whatever we wanted and living a normal life. Since that time we have actually
both gone through a hospital stay and surgery. In February Nicole gave us a
scare. She started having some pain in her lower abdomen and her CT scan was
not very clearly showing a problem. Her lab work looked good and her pain was
controlled by pain killers. But after several days of monitoring by our surgeon
at UAB and consulting with our surgeon at MD Anderson she underwent exploratory
surgery. Luckily, everything GI related looked great; however, her ovary was
quite large and discolored, so they did have to remove it. Pathology all came
back clear and after a week of recovery she was back to work and feeling like
herself again. Little did we know this scare was gearing us up for the big show
that would come a month later.
It really kind of began on Saturday, March 11th. I had an
odd pain in my left side, right over my J-tube scar. It came on after I scarfed
down a taco taking my son to baseball, so I dismissed it as gas pains. Over the
next day or so the pain got worse, extending to my whole abdomen and back and
causing some bloating. But it was never unbearable and by Tuesday I was back to
normal. I was incredibly busy that week helping organize and run a consignment
sale at my church, but I felt great. I was eating pizza, mini brownies, and
running all over the place with lots of energy. On Tuesday, March 21st
I woke up with the same pain in my left side and as the day wore on it became
increasingly worse, I was incredibly bloated, and started having spells of
nausea and vomiting. Trying to be Super Mom I loaded up my son and took him to
baseball practice, but by this time it was incredibly obvious that something
was wrong. My husband came to take me to the ER and a close friend came to take
Andy home. We told him bye and that we were going to go see the doctor and be
home that night. We were wrong.
Our first stop was to a freestanding ER center not far from our house.
It’s a new facility, super efficient with a CT machine and we’d been there
before when I had a GI bug and needed fluids. We figured I’d be evaluated, have
a CT and some pain meds and be told to follow up with my doctor the next day. As
we were there being evaluated the pain kept getting worse and worse and reached
an unbearable level when I drank the contrast material for the CT. At this
point my blood pressure also started to go up and up. This was alarming because my blood pressure is
usually a perfect 120/80, even during labor. They gave me morphine and three
rounds of Dilaudid for pain and that couldn’t even touch the pain. My CT results
showed something called mesenteric swirling, which is a sign of an internal
hernia or twisting of the bowel. The decision was made at that point to place
an NG tube down my nose to help relieve pressure and to transport me to a
hospital to be evaluated by a surgeon. And here is where a series of miracles
takes place.
We were asked what hospital we wanted to go to and immediately said
UAB. That’s the best facility in the state and Dr. Heslin, the surgical
oncologist we’ve worked with since returning home is based there. We were told
that UAB had no beds available, the ER was full, and they were diverting
patients to other facilities, so we’d need to select another hospital. We asked
for the second-best facility in the area for GI issues, St. Vincent’s and were
told the same thing. At this point they said they wanted to send me to UAB
West, a small hospital outside of Birmingham that had never seen someone like
me (a stomachless 32 year old). My husband, my hero, was not going to accept
this, he was making sure I got transferred to a hospital where they could
properly treat me. I was in extreme pain and after all those pain meds I was loopy,
so poor Steven had the weight of all this on him. After being in the ER for
several hours, his phone was dead and mine was down to 5% battery. We had no
clue we were going to end up in the ER all night, so we didn’t think to bring a
charger. For those who don’t know, Steven is a medical device sales rep and he
sells instruments used in some GI surgeries, so he has a work relationship with
our surgical oncologist as well. Since his phone was dead, he recalled Dr.
Heslin’s email from memory and sent a desperate email from my almost dead phone
asking what we needed to do. By some miracle, Dr. Heslin happened to pull out
his phone to check something and saw the email and immediately got on the phone
with Steven (who had wrangled a charger from a doctor at this point) and
started discussing lab results and symptoms. He also called UAB and made sure
they found a bed for me and arranged for an ambulance to come and get me. We
have learned that Dr. Heslin is the MAN at the UAB and if he wants something
done then it’s going to happen. Shortly after getting off the phone with Dr.
Heslin the ambulance arrived and off to UAB we went. When we arrived, we met
with one of the residents who took more blood to run repeat labs and sent me to
X-ray to make sure my NG tube was placed correctly. At this time he told us he
didn’t think I needed immediate surgery, so I told Steven to settle in and get
some rest. It was around 1:30am at this point and we were exhausted. TMI alert,
but I want any fellow CDH1/TG friends to be aware of every symptom. When I
returned from X-ray I felt like I needed to go to the restroom and when I did
it was all blood. At this point I knew something was really wrong. As I was
explaining this to the nurse the resident came back in and explained that my
labs had significantly worsened and that I was being taken to immediate
surgery. Everything moved so fast at this point, they started prepping me right
then and there and Dr. Heslin came in and could only really tell us at that
point that they believed my bowel was compromised. The last thing I really
remember is being placed on the table in the OR with Dr. Heslin holding my hand
and telling me everything was going to be okay.
Here is what we would find out. During my total gastrectomy in May
2016, a portion of my intestine was tacked up for the feeding tube to be
inserted. My bowels became twisted at this spot and my superior mesenteric
artery, the major source of blood supply for the intestines, had become twisted
as well. What my lab work was showing was sepsis and as soon as they opened me
up (and this was a full on open surgery, incision from sternum to below my belly
button) they saw that my entire bowel was gray and dying. After surgery my
family was told had I not made it to UAB when I did and been taken to the OR
when I was then I more than likely would have died. I had around a 25% chance
of survival when I entered the OR. Only a 25% chance of living. That’s hard for
me to even type. I almost lost my life, I almost left my baby boy, my husband,
my sister, my family and friends. It scares me so much to think about how close
I was to dying. And it makes me even more grateful that my husband could keep
his head clear and email Dr. Heslin during all the chaos of trying to get a
hospital to take me. As soon as the bowel was untwisted the blood rushed back
in and almost everything turned from gray to pink immediately. There were a few
spots that stayed dark and were concerning to the doctors, so the decision was
made to just close my skin incision, leave me on the ventilator in ICU, monitor
my labs and take me back into surgery the next afternoon to make sure all blood
supply had been reestablished and no part of the bowel had died. All of this
was explained to family, but of course I had no idea, so I wake up restrained
in recovery on a ventilator. Hands down the scariest moment of my life. They
kept me in the recovery area most of the day Wednesday so that Dr. Heslin could
monitor me between cases and later that afternoon I was moved to ICU. There was
a precious resident named Lindsay who stayed by my side all day and after a
while she asked if she could trust me not to pull out the breathing tube and
when I nodded yes she removed the restraints from my arms. That was amazing
because I could actually use sign language and write notes to my family, it was
so hard not to be able to communicate. They kept me pretty sedated while I was
on the ventilator, so most of those first two days are a fog to me. What I do remember
is being surrounded by the people I Iove the most: my husband, my big sister,
my parents, my sister-in-law Amanda, and the most amazing friends in the world,
Brittany and Kim. Praise God my labs continued to improve over those two days
and on Thursday afternoon I went back to the OR where everything looked great
and they were able to close me up and remove the ventilator. I returned to ICU
for the night and moved to a regular room the next day. I stayed in the
hospital over the weekend and was able to go home that Monday evening. I can’t
tell you how good it felt to be reunited with my little boy after such a scary
ordeal.
Without a doubt this recovery has been much harder on me than the
recovery from the total gastrectomy. I had been doing so well with eating prior
to this set back, I had a lot of energy and was maintaining my weight. Now I am
struggling to eat again, dealing with food aversions and what I would call
extreme dumping syndrome daily. Mornings are the worst for some reason, nothing
I eat or drink agrees with me, but by the afternoon (after my midday nap) I can
tolerate more foods. I have lost another 16 pounds and I am literally a walking
skeleton at this point. For the sake of transparency, I will also say that I am
really struggling mentally too. I have nightmares of waking up tied down and
being unable to speak, just like when I woke up from my first surgery. I get
overwhelmed very easily and cry more than I ever did after the TG. I think the
shock of it all has really taken its toll on me. We have made the decision to
seek counseling with a professional who handles trauma victims to try to get
past this hump. This has also been incredibly difficult for Steven and our
sweet Andy. We thought Andy was handling everything well until there was a mix-up
at school and his number didn’t get called during carpool, he thought we forgot
him or were back in the hospital and had a complete meltdown. His teacher also
told me that some days he doesn’t play on the playground, he just sits beside
her and will kind of snuggle up to her. Hearing this completely broke my heart.
My sweet little boy is always so full of life and loves to run and play, but
there are days he just needs to sit and get extra love. He’s so much like
Steven, he puts on this brave face and holds everything in until he just can’t
hold it anymore. So, we’ve also decided to seek some counseling for him. He’s
been through so much this past year and we want him to be able to talk about
his feelings and not hold on to things that hurt him.
I don’t want to end this post on a negative note. Despite all the bad
the past month has held, we’ve seen God’s hand caring for us at our lowest
point. I am a firm believer that God will give you more than you can handle at
points in your life and these unbearable moments are when we learn true
dependency on Him. We also believe that we serve a loving God and that these
things don’t happen to punish us or because we weren’t faithful enough. My
husband reminds me all the time that we live in a fallen creation and we can’t
let the circumstances of this world define us, we must stay firm in our faith
and let God’s hope shine through us even when we’re deeply entrenched in pain
and suffering. At the end of the day, I look back on that night in the ER and
realize that the things of this world were lining up for me to not receive the
treatment I needed and to die; however, God lined up a series of events that
would get me exactly where I needed to be, when I needed to be there and
ultimately I was spared. On my absolute worst days, all I have to do is look at
Steven and Andy and I’m relieved to be here with them, no matter how awful I
physically feel.
We have also seen a tremendous outpouring of love and compassion during
this ordeal. Every need we’ve had has been met before we could even speak it. God
has truly put us on a path and surrounded us with an amazing group of people
who love us and lift us up in our hardest times.
Hopefully our next post will find us all healthy and in great spirits!
