Sent in by Nicole 5/17/2012
“SERIOUSLY, God, I have my limits,” I mumbled under my
breath. I looked up at Jason in the Emergency Room as
Wrenn screamed her head off while being tortured by the ER team. They struggled to find a vein for an IV. “I need those guardian angels back because I
can’t watch this!” The second team came
in (veterans, they called themselves) and I hid my head as they tried a
fifth and sixth attempt on her little ankles.
I looked up—NOTHING!!! I was so angry and just tried to hold my
composure as I again looked away and caressed Wrenn’s sweaty little head. Her veins were dry and the only liquid
draining from anywhere in the room was from my eyes—I finally ended the
torture.
AS I write my blog entry I inhale deeply while thinking
about the last six months. A sigh of
relief, finally, but I still feel the tension in my shoulders from all the
events that took place. When I signed up
for Wrenn’s double lung transplant, I knew we’d be exchanging one set of
problems for new ones but I’m the type of person where I do well if I know what
I’m dealing with—then I can battle forward and ultimately conquer any obstacle
in my way. For the last two years, on
more than one occasion, Wrenn has been deemed a ‘mystery’ child with a couple
of curves that were thrown her way. I’ve had doctors in meetings throw up their
arms and say, “I’m just damn scared of the girl. I don’t know what to do.” I’ve seen gray hairs appear before my eyes
on some of medicine's finest. I pray that we’re done with the mysteries for
a while.
WHEN Wrenn was born she breathed REALLY fast. She was on 8 liters of oxygen and she was fed
a thick mixture of breast milk and milk proteins to help plump her up, so that
the transplant team in St. Louis would accept her into the transplant program. What I can tell you is that her system
(Gastro) was a MESS back then. Her
digestive system was working just as hard as her lungs and everything in the
body had a cause and effect, especially when organs are working really hard or
not in sync. Her body back then was on
Fight or Flight and it reacted to keep her alive.
ONCE Wrenn arrived in St. Louis in July 2010, her heart and
lungs weren’t working quite as hard thanks to sedation and intubation but her
digestive system struggled. Wrenn had loose
stools, daily vomiting, minimal weight gain— the list goes on. All signs of a
very sick child in desperate need of a double lung transplant.
EVEN though Wrenn received her transplant in September, her GI
issues continued; Bloating, loose watery stools, cramping, discomfort with gas
and frequent bowl movements confused doctors and baffled nurses. To most, it was an easy diagnosis; every
medication she took had terrible side effects; cancer, rash, loose stools,
frequent stools, cramping, nausea, itching, sun sensitivity, stunted growth—the
list went on and on to the point of us NOT wanting to finish reading the risks
for fear of what COULD happen with long term use of the rejection drugs.
IN December of 2010, Wrenn appeared stable when she came
home but feeds were always a struggle with the G-Tube. It was a guessing game for us to know how
much was enough, how often, how to introduce food and when? What would irritate her, would she choke
while trying food or worse, aspirate into her new lungs? It was a process where walking on egg shells
became a daily routine.
GI wise, Wrenn had good and bad days but the loose stools
were always a part of our daily life. We
chalked them up to the Milk of Magnesia she took 3 times a day to replace the
magnesium the rejection medications depleted in her body. She had some solid stools, but frequent ones
for sure and her weight was at a plateau, which wasn’t good for her new lungs,
which needed good nutrition to keep them healthy and strong. To give you perspective on how rejection
drugs affect a baby/toddler—Wrenn is the size of a 14 month old baby, even
though she is 25 months old. She is
STILL wearing size 3 pampers (she came home from the hospital wearing the same
size over a year ago) and as of 10 days ago, only weighs roughly 18
pounds.
ONCE we moved back to Virginia things were stable and OKAY
for Wrenn standards. She hadn’t gotten
sick, wasn’t constipated (that’s for sure), and we were in what we thought was
a GOOD place. HAHA! Never blink when
it’s Wrenn.
ALMOST acutely, back in early February, Wrenn started having
painful bowl movements, gas and diarrhea (yep, worse than before) and so I thought she
had an intestinal bug. I waited eight
days and she didn’t seem to have fewer diaper changes.
I waited two more days and called the transplant team. They ordered a ton of stool tests to be done
to see what type of infection she was fighting.
Two weeks later her urine and stool tests came back negative. She was perfect according to the tests, but still not doing
well. I tried for the next three months
to take away foods that might have been the problem like milk, cheese, wheat,
fruit, etc. But nothing worked. Then I
thought that maybe she was getting too much liquid and her body was rejecting
it (the colon wasn’t able to hold in the nutrition), but that wasn’t helping
either and only made her lose weight for the lack of feeds during the day).
AFTER two more months of this nightmare routine of trying
new things and taking things away, Wrenn was worse with nightly crying episodes
of pain and struggling to let out gas.
The lack of sleep made both of us very cranky and I was very
frustrated. The ONLY conclusion I could
come up with was that her antibiotic was bothering her. She takes this broad spectrum antibiotic for
life, Monday, Wednesday and Friday to ward off common bacterial issues like ear
infections etc. It’s a preventative
measure and a MUST for her survival. I
knew that antibiotics were hard on the digestive system (they were on Tanner)
and it didn’t help that she HATED yogurt.
In fact, dairy products only made her diapers worse.
I wasn’t sure how but I knew her gut was done as far as good
bacteria. What I didn’t realize at the
time was that I needed new eyes to help solve her issue. I accept that sometimes it’s best to hit rock
bottom so you can float back up to the top.
I feel like this is learning the hard way but sometimes it’s the ONLY
way. As long as we get to a better
place, it’s all worth it.
HOW we finally reached rock bottom: In early March Wrenn had two terrible nights
of screaming episodes and we did everything possible to make her better but
nothing worked. Finally, Jason gave up
sleeping and brought her downstairs. He
fed her some soy milk, hoping she might be happier with a little food in her
belly and to help push out some trapped gas since her pain seemed to be in the
lower intestines. Well, it worked! After that huge bowl movement, he came up
stairs with Wrenn in his arms, turned on the light and said, “I think we need
to take Wrenn to the pediatrician.” I
looked at him with tired eyes and assumed her diaper rash had gotten worse but
what I saw was even more horrible than some minor irritation. I glanced down at Wenn’s bare bottom and saw
that a big red, blooming flower had erupted from her tushie. “No,” I said, catching my breath and jumping
out of bed like a crazy person, “get her dressed; we’re going to the ER!”
MY first instinct was that she had pushed out her
intestines, which I’d never seen in real life outside of a body. Needless to say, I was freaking out! I didn’t
even know where to take her since we’d not been in Virginia long enough to prepare for an
emergency type situation.
IT was a crazy 20 minutes.
My cell phone was dead, Jason’s phone was missing at the moment, Tanner was
asleep, and neither of our parents would answer their cell phones so we could
tell them what was going on. I finally
found a cord, plugged in my phone and called the pediatrician, who told us to
go straight to MCV/VCU Children’s ER.
They told us she’d be more comfortable in an ambulance and to keep the
area damp. (The ambulance was 5 minutes
away but took 30 minutes to get to our house—still trying to figure that one
out!)
MY imagination went to the worst places—when you live in a
Children’s Hospital for a year you fear a LOT more. I kept
thinking surgery, possible infections; long term issues that would make her
need more surgeries and constant pain without a cure. I couldn’t stop worrying as I followed the
ambulance to the hospital. Once we arrived they took us back to a private
room.
WE described what had happened to the ER doctor and he kept
asking if Wrenn had ever been tested for CF (Cystic Fibrosis). I immediately assumed that CF was among the
first test they had done when she was born with all her respiratory issues but
they told me that a blood test isn’t as good and ONLY a sweat test is 100%
accurate when testing for CF (a sweat test can’t be done in the NICU, at least
it couldn’t be done for Wrenn in the shape she was in). I started texting my friends at Winnie Palmer
and told them what was going on; their support for our family continues to
amaze me daily… hugs to them for being there for us through all of Wrenn’s ups
and downs.
FINALLY, an hour later, the doctor was ready for the diaper
to come off—apparently, the prolapsed rectum had gone back inside. This was both good and bad. Bad, because once it happens, there’s a
better chance of it happening again and again.
Good, because she was free to go home; but what do we do if it happens
again? UGH! The doctor told us if it doesn’t go back in
within an hour to come back to the ER. Well, this sucks! Hospitals aren’t a great place for Wrenn with
her immune suppression. She’s going to
end up catching something and then to drop our lives every time this happens
and rush to the ER isn’t an option. So
far we had more questions than answers.
They referred us to a very reputable GI specialist from MCV/VCU named
Dr. Ted Williams. The appointment was set for that following Monday (3 days
later).
WE consulted with Dr. Williams who ordered a ton of blood
work to rule out allergens, Silica’s disease, immune tests, stool tests and
anything else that hadn’t already been done.
He changed her intake on formula and stated his concern for her weight,
which has always been a struggle. I told
him I didn’t think it was allergy related although I do see a difference with
milk products.
WRENN did okay for four weeks past that appointment but
then, Sunday prior to leaving for St. Louis (mid-April) she had another
incident, but luckily the prolapsed rectum went back in—no ER visit
necessary. Then the following Thursday
it happened again twice and we couldn’t get it back in (April 19th). We again had to take her to the ER and this
time, she was so irritated that the ER team couldn’t get it back in
either. So, we had to have her wait for
GI surgery to take a look. Finally they
decided to admit her to Peds and it wasn’t until 12 hours later that they got
the prolapsed rectum back in. They had given her an IV and morphine to help; otherwise we’d still be there waiting.
The surgeons gave us a lesson on how to put it back in, but let’s face
it, this isn’t the entire issue and how in the world was I ever going to have
any one else watch her if this kept happening?
This is our child and our responsibility, if it means putting in
rectums, then that’s what we’re going to do, but how dedicated is the rest of
our family? L
MCV/VCU held Wrenn overnight for observation and taped her
tushie shut to help with gravity. They
didn’t continue her feeds until the next morning (Saturday). The doctors at MCV again said we needed to
have Wrenn tested for CF, just to rule out Cystic Fibrosis. I tried to wrap my head around how my child
could possibly be cursed with not only the 4th diagnosed case in the world of a rare lung
disease with a double mutation for ABACA3 but then, how could she possibly have
CF on top of that? WHAT A NIGHTMARE I
was living at this moment!
WE left the hospital around 2PM Saturday— unpacked from the
hospital stay and then repacked our bags so we could head to St. Louis for Wrenn's 6 month check-up. The 16 hour drive
gave me plenty of time to rethink the last 3 days and I was still in a sheer
state of panic. What if this doesn’t stop happening? What if this is her life of being
in constant pain and hating food and losing more weight? The lungs seem perfect but the rest of her
body is taking a beating. I was so
upset and all I could do is worry.
DESPITE my anxiety the kids were great on the long
trip. The only incident we had was
Wrenn’s G tube broke inside of her in Kentucky (luckily it wasn’t in West
Virginia, where it happened before and added an extra 3.5 hours to our trip
when we visited an ER). I had a spare
G-Tube, which wasn’t the right size but was perfect for a temporary fix.
AROUND 6pm in St. Louis we had dinner and checked in to the
hotel. Wrenn was on limited food and
water for the next two days, which wasn’t going to help her weight loss but we
didn’t have a choice. On Monday morning
she had labs. Sadly she was so dry they
couldn’t get a vein or blood out of her at all.
It was a nightmare. A true sign
of all she’d been through and what we’d witnessed in the ER. I wasn’t looking forward to the multiple
sticks and two IV’s that were necessary for her procedures both days.
NEXT we then headed to Immunology to see Dr. Ellis, who told
us great news. They had checked her
levels and said that Wrenn’s body had more than doubled in building up her own
immunity since last October. We had
stopped all the IVIG infusions throughout the winter, which meant less risk for
infections and less doctor office visits. (Yeah) This was great news and meant that Wrenn’s
body was making its own antibodies and that she was thriving. It certainly helped that she hadn’t gotten
sick during flu season (knock on wood).
Dr. Ellis talked about Tanner going to school but it’s a conversation
that will take place a hundred more times before he actually goes,
meaning, I just can’t say where—when—for
sure. We have to take our lives day by
day and see how things are going to make such a big decision that affects our
entire family.
TRANSPLANT clinic started about 10:30am. Both the doctor and coordinator said Wrenn
looked amazing. They were happy with the
IGG numbers (From Dr. Ellis) and minus the prolapsed rectum incidents, said
that Wrenn looked like a normal little girl.
Since they are a lung transplant program, (work above the waist) they
wanted the GI specialist in Virginia to continue working with us on her GI
issues. I was sad that we weren’t going
to get answers in St. Louis but would know all the results pulmonary-wise by
Wednesday afternoon.
WRENN was put under for all her infant lung tests around
11:00am. She came out not needing any
oxygen and the results on her tests were great! Both lungs were doing equal work and sounded
great, looked great and worked great—all great news. J
AROUND 5PM that evening we met Wrenn’s old therapists from
St. Louis (Kayla and Julie) for dinner at our favorite (well, Wrenn’s favorite
Italian Restaurant) Zia’s. It was so
great seeing them and they loved visiting with Wrenn, who loved showing off and
made them both smile.
THE next morning we were up bright and early for Wrenn’s bronc. Around 9AM they took her back to the OR and
within an hour she was in recovery, snuggling with her puppy and blanket. She again did great and didn’t need any
oxygen post procedure. We just had to
wait for the biopsies to come back (24 hours) before heading back to
Virginia.
THAT evening we had dinner with one of Wrenn’s nurses from
the NICU (Aunt Beth) and Jason’s former boss, Billy. It was nice catching up, exchanging photos
and celebrating great news with people we had shared so much with over the year
and a half we had lived there. Both Beth
and Billy had seen Wrenn at her worst.
It’s great to show how she’s beating the odds so far and that God is
keeping her healthy and well.
IN between all the great news Wrenn had another prolapsed
rectum. The doctor on call told us to
head to the ER and so we did. When we
arrived we checked her diaper and saw that it had gone back in. We returned to
the hotel room and sat on pins and needles, worried about the long drive ahead
as her GI issues continued.
WEDNESDAY morning we went to Wrenn’s last appointment at
Children’s which was with her long time therapist from the NICU (Rebecca). Rebecca evaluates Wrenn every six months to
see if she needs more or less sessions (right now Wrenn has speech once a week
in Virginia) and this is a nice way to make sure Wrenn’s on track
developmentally. Rebecca was amazed at
how active Wrenn was. She watched her
climb up and down slides, walk over uneven surfaces, hop up onto the trampoline
and jump, step down and chase and throw a ball across the room, pick out heavy
toys and carry them to her own spot, giggle, smile, interact, sign, and act like
a totally normal child despite all she’s been through. Needless to say, Wrenn got straight A’s on
this visit and our family couldn’t be more thankful.
THE very next morning we got the thumbs up from the
transplant team that Wrenn’s biopsies had all come back negative, NO REJECTION J With this news we were free to head
home.
OVER the next 15 hours (in the car and the hotel we stopped
at in West Virginia) Wrenn had two more prolapsed rectums that followed painful
screaming episodes. The very hour we
arrived home in Virginia, we again headed to MCV/VCU ER. (It was a week ago exactly that the exact
same ER team had helped us before). They
were sad to see us back!
WHEN we arrived at the ER at MCV they wanted to put an IV in
Wrenn so they could give medications and be admitted to Peds for possible
surgery to fix her habitual problem. The
problem was Wrenn was so dry from the days in St. Louis from having missed
feeds that the ER couldn’t find a vein again. Jason and I held Wrenn down while they tried
in each arm, wrist and then each leg. It
was painful to watch and I had tears coming from my eyes. Finally I said, no more. I told them to give her morphine through her
g tube and end this madness! Within
minutes they had her relaxed and the surgical doctor came in and pushed the
rectum back in.
(I want to note that almost 99% of all transplant patients,
especially kids, have GI issues. These
are very common issues for the most part because of the side effects from the drugs
and the child’s overall health. It’s
easy to misdiagnose a real problem because of the medications and diet).
THE surgical team fed her Pedialyte during the night and
chose to do the most non-invasive surgery possible that would temporarily keep
the rectum from being pushed out, which would hopefully buy us some time to
find out why her GUT had so much pressure.
THE next day Wrenn was taken to the OR. The procedure: the surgeon would inject sugar
water into the rectum in three different places, causing the rectum to swell
and scar so that it doesn’t easily pop back out. The surgical procedure can last a day or a
month or a year, it’s just up to how much better or worse she gets with the GI
issues. They could have done another
procedure that staples the rectum inside but it had much more risk of infection
and side effects. They don’t like to do that procedure on babies or kids
because generally a prolapsed rectum is a temporary issue and corrects itself
once the child is older.
THE surgery took no time at all, in-fact putting her under
and finding an IV spot took the most time. Her arms were so bruised from the last ER
visit and then the labs and IV’s in St. Louis; she looked so abused.
THAT night after the surgery they started her on a drug
called Flagyl. This is a drug the GI
doctor thought might help Wrenn if it was an overgrowth of bad bacteria in her
intestines. He said if the drug doesn’t
fix her bowls, they’ll have to do a biopsy and test her large and small
intestines for other issues. (I didn’t even want to go there but at least we
had a plan to cross things off the list).
After dealing with this issue of mysterious pain, gas and crying episodes
all night, I just needed answers.
WRENN came out of the surgery in a lot of discomfort but
after I had demanded she receive some morphine, slept soundly for two more
hours and then woke up thirsty and in a much better mood. The surgeons ordered no food or water for 24
more hours to protect their work.
THE next day (Saturday) around 3pm she was given a huge
lunch and boy did she eat. Macaroni and
cheese, chocolate milk (her new formula called Neocate), peaches, bread, mashed
potatoes and pudding for dessert. Now it
was all about watching her for the next twenty-four hours to see how her system
would take the food and see if the Flagyl would make a difference. It was nerve wracking to watch and especially stressful each time she pooped but she did great!
AFTER twenty-four hours we were released from the hospital
around 4PM Sunday afternoon. It appears
as though the Flagyl did wonders for Wrenn and so an overgrowth of antibiotics
was indeed her problem. When I think
about all the times she’s had antibiotics in her short life it’s no
wonder. Her body was on overload with
the stuff and needed something to wipe it out.
It seems easy now, but it’s hard to diagnose a child who is special and
I think I have new eyes to thank for this cure.
WRENN was on the Flagyl for 14 days and I’m so excited to
say that she’s a NEW child. She used to
have 20 diapers in a 24 hour period, now she has 6. She loves food now, sleeps through the night
and it just seems like she feels so much better.
I just can’t imagine what she would have said if she could have talked
about how much pain she was in. I dare
say she was probably miserable for over a year with these issues and they just
went unnoticed due to the rejection drugs and history of GI issues.
SOME kids stay on Flagyl, but we are going to see how it
goes as a one-time dosage, now that I know what to look for (I believe I saw
her progress to what was the WORST case scenario) and so we can literally nip
this in the butt next time. J
WHAT a whirlwind we’ve experienced for the last 6 months. You can’t blink with a child like Wrenn. This is why I can’t work outside the
home. It’s impossible to know a child like
Wrenn without understanding her daily and nightly routine. Giving the meds at the precise time is life
or death for her. The amounts she is
given are life and death and seeing any type of change with her physiologically
is so important and a must to her survival and overall health.
AT Wrenn’s GI appointment today in Richmond she weighed 19
pounds, 9 ounces, which is a GREAT weight gain in two weeks. (Better than a
pound) We are hoping that she’ll stay on
pace and her body will start catching up. She is still at an 8 month old weight
and a 14 month old body. But I’m sure
she is going to thrive now that she is holding in nutrients.
WE had such great news from St. Louis and they were so happy
to hear that this wonder drug made Wrenn ‘perfect’ again. We are in so many ways cursed and
blessed. I continue to ask God to put
the right people in my path to make things better for Wrenn and for our
family. I have to say, I’ve learned more than my share about the human
body and medical devices. I have to say,
putting a rectum back in place wasn’t anything on my wish list. In the ER I felt the need to tell God I have
limits—Obviously, I’m not the one pulling the strings. So the best I can pray for is a DAMN good
team to get me through the rough times.
I want to thank my Winnie team for answering all our behind
the scenes questions while we were trying to figure out Wrenn’s issues. You guys are the best!! I’d be so lost
without you all. Perri, you’re Wrenn’s little guardian angel and mine, too!
UPDATE on Tanner:
TANNER was really looking forward to seeing his buddies in
St. Louis and played every single hour he could in those three days at the
Children’s Sibling Playroom. He was
exhausted at night and had the best time with his ole’ pals—Mr. Pat and Miss
Rita. The Sibling Playroom staff is such
a wonderful part of our family and we really do look forward to seeing them every
six months.
I also want to thank all our friends and family who prayed
for Wrenn when we needed answers and for coming to the hospital to see Wrenn
(Mandy, Laura, her MCV doctors) and our parents for helping out with Tanner so
we could take care of Wrenn. Our lives
take a team effort and it’s impossible to do it all alone, even though the sole
responsibility falls upon our shoulders.
This is the type of support that gets us through the difficult/trying
times and we couldn’t do it without you all.
On a personal note: I’m
thinking that someone should seriously present me with an honorary nursing
degree because I’m pretty sure I’ve earned one at this point! J (Editor's Note: I agree!)
Xoxo Nicole
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