The dawn of 2012 (or February as we'll
call it in this post) saw us heading toward the tail end of another
cold and flu season. Since our life continued to revolve around
C's many medical trials and tribulations, the cold and flu
season continued to be particularly troublesome. Toward the end of
February as my husband and I approached our first 100% anniversary,
C came down with a Very. Bad. Bug. Even though we were on
Synagis for a second year, he had RSV. We were at the tail end of
the effectiveness of the shot for the month when he got it. As soon
as we got next month's dose, he got a whole lot better. All in all,
not a lot of fun. It was the start of lingering respiratory issues
that would plague us for most of the year.
The end of February also saw TheMan and I
reach our first 100% anniversary. TheMan is only required to do
something for our anniversary when we hit 100%, so it was a big year
for him. He made us reservations at the melting pot. The Saturday
night of our celebration rolled around and C was sent off to
visit Mimi and Papa. TheMan and I dressed up and had a lovely 3 hour
long dinner at the melting pot. It was a lot of fun.
After we had our bout of RSV, life
became a series of illnesses and ER visits. I began to fear we were
facing asthma issues. Nothing seemed to control the flare ups.
Anytime C experienced even a mild fever (99.3 degrees) he'd
start retracting. He was wheezy with any illness and all in all,
anytime his system took a hit, he had no reserves. C continued
to gain and lose the same pound or two. Even though he grew in
height much of the year, he didn't gain weight and in the end,
tumbled completely off the weight chart. By the end of April, we had
a rescue inhaler and had been on steroids multiple times. I think
the final straw was the last weekend in April. My MIL called me at
1:30 in the morning. As a respiratory therapist, she simply wasn't
comfortable keeping C any longer. She brought him home and
when I heard how he was breathing (stridor and wheezing) I knew we
needed to take him in. We ended up in the ER under observation until
9 in the morning. Finally, after hours of breathing treatments, we
were allowed to go home. It was a close call between admission and
going home, but we were pretty comfortable assessing his breathing,
so in the end, they let us go.
After months of soul searching and
second guessing, I decided I had to do something different. I
gathered our medical information together in early May and sought a
second opinion from Children's Hospital Boston (CHB). CHB is the
number one children's hospital in the country and the top hospital
when it comes to pediatric cardiac care. Researching the issue of
mitral valve regurgitation lead me to their congenital valve program,
the only program of its kind in the country. The surgeon leading the
efforts of that program is Dr. Chris Baird. For months, our local
cardiologist had been counseling patience. He wanted us to wait
until C was larger and have the valve replaced. He was
convinced that repair was not a viable option and that an eventual
repair was a foregone conclusion.
Just days after I delivered our medical
records to Dr. Baird's assistant at BCH, I received a call back from
Dr. Baird himself. It was a Friday night about 7pm, which is 8pm in
Boston. He called to tell me he had reviewed our records along with
Dr. Gerald Marx, our newly assigned cardiologist and from what he
saw, he thought that a repair was our best course of action. He
advocated for the repair to occur very soon. He explained that he
could see an open cleft in C's mitral valve, and that closing
that valve would almost certainly resolve our weight gain issues,
lung issues and most likely ensure a permanent solution to C's
problems. The odds were heavily in our favor that he'd never need
surgery again.
I was shocked. I honestly expected to
be told we should do a repair a few years down the road. I had
believed our cardiologist's theory that the weight gain, repeated
illnesses etc were unrelated to the “mild to moderate” mitral
valve regurgitation we were told C had. The surgeon and
cardiologist at CHB had a markedly different opinion. They felt the
issues C was experiencing were most certainly related and
absolutely should be addressed quickly. Unlike our local
cardiologist they did not see a benefit in allowing C's heart
to enlarge as they didn't want to place a prosthetic valve. They
wanted to repair the valve he had, which was growing larger, less
elastic and more fatigued with every passing month.
Our local cardiologist urged restraint.
He counseled me that we could still end up with a valve replacement
and if we did, we'd have to do it again in just a few years. He
stressed how much of a gamble he felt this was and how much he felt
our medical issues were unrelated to C's cardiac status. I
began researching mitral valve replacement and Dr. Baird.
Researching him and the congenital valve program at CHB lead me to a
paper entitled “Mitral
valve operations at a high-volume pediatric heart center: Evolving
techniques and improved survival with mitral valve repair versus
replacement”. At this point, our occupational therapist (OT),
pediatrician (ped) and gastroenterologist (GI) all felt that the
cardiac issues C continued to experience were negatively
impacting his health. In the end, I felt that the opinions between
CHB and our local hospital were so different that we had to seek an
impartial third party.
Between January and May, C had
gained .25 to .5 lbs. You could clearly see his ribs and count all
the nobs of his spine. He was eating as much as he could, and he was
starving. In June of 2012, we undertook a 3 day nutrition challenge
where we recorded every calorie C ate. He'd been on an
appetite stimulant called Periactin for almost 3 months at that point
and though his appetite was much improved, we still seemed to yo-yo
wildly and not gain ground. The nutritionists calculated the
calories C ate over that 3 day period and found he was eating
120% or more of his caloric needs and still wasn't gaining weight.
I contacted Children's Hospital of
Philadelphia (CHOP) in June following the nutrition challened. CHOP
is the second ranked pediatric cardiology program in the country.
Our local cardiologist had cautioned that BCH was an aggressive
facility that treated sooner rather than later. He explained CHOP
could go either way, but was somewhat less aggressive. I spoke with
their second opinion coordinator and explained that I needed an
impartial third party that would tell me what course of action they'd
advocate with the understanding that we wouldn't be following any
course at that hospital, but rather be choosing between 2 courses of
action at other hospitals.
CHOP created a wonderfully diplomatic
and amazingly informative letter that taught me more about my son's
current condition than any information I'd received in the year
preceding that. They corrected a few errors in the report information
provided by our local heart program. Their explanations highlighted
the misunderstandings our local program had regarding my son's
condition. They also confirmed the opinion of BCH, our OT, GI and
Ped, the tremendous issues we were having with respiratory health,
weight gain and growth were a direct result of the severe mitral
valve regurgitation that C was experiencing. Both BCH and CHOP
suspected that C was also experiencing some degree of Pulmonary
Hypertension due to the 2 jets of back-flow shooting across his
atrium with every beat of his heart.
Given my new information and the fact
that CHOP firmly agreed with BCH that we should repair that valve. I
once again contacted Dr. Baird's personal assistant in early August.
I sent the latest echo which I hoped was clearer as it was performed
by our favorite sonographer. Both BCH and CHOP had commented on the
quality of the previous echo and the problems they had viewing the
study and by not having all the views needed.
Dr. Baird called me back 2 days after
he received the latest echo. He again called late in the evening and
he spoke with me at length. He stressed the fact that he truly felt
C's current valve was repairable. He explained how he'd handle
the repair and his thoughts that it would be the last open heart
surgery (OHS) we'd ever need. TheMan and I talked it over and faced a
circumstance that we'd thought would occur in the distant future.
Originally, when we were told of C's regurgitation immediately
following his first surgery, the surgeon said he could last a “long
long time” with that level of regurgitation. At the subsequent
follow up 3 months later, our cardiologist told us it would be well
into his teen years before we needed to address it. 3 months after
that, he said it would be the early teens. 6 months after that, he
said he thought he'd get to his teen years and the final appointment
before we decided to go to Boston, our cardiologist said he hoped
we'd get 3 more years. Deciding it would be this year instead of 3
years from now was actually still pretty wrenching, but the chance of
having this be the last surgery and finally being able to put some
weight on C lead us down that path.
C's second birthday was August
9th. On August 10th, BCH called and we scheduled his open heart
surgery for September 26, 2012. The week that followed I was a
whirlwind of activity as I gathered documentation for the insurance
company, secured lodging through patient and family services at BCH
and transportation through the Angel Flight network. Once that was
all handled, I was stuck with waiting and worrying. Once we decided
to have OHS, I did contact my insurance company and asked for a
dedicated coordinator. Calling Customer service did not work, as
they didn't know what I was talking about. My benefits coordinators
through my work were able to help me and a complex case manager was
assigned. She was fantastic and helped me navigate the insurance
maze with ease. She complimented me on my knowledge of my son's
defect and told me I had educated her on the condition more than she
ever could me. In fair trade for that, she certainly educated me on
the ins and outs of insurance.
Coventry is an amazing and wonderful
insurance company who surely helped my son receive the appropriate
medical treatment using their national network. I provided
documentation from my cardiologist, pediatrician, the third party
opinion from CHOP and a personal letter explaining why I felt the
appropriate level of care wasn't available locally. Coventry took
that information seriously and sought to help me meet my son's needs.
After the many horror stories we've seen on the news, I'm incredibly
pleased to say my experience has been anything but a nightmare. All
of my claims and issues have been handled calmly and easily. I can't
thank the employees of Coventry enough for their tireless work.
C caught yet another upper
respiratory infection the first week in September. He again started
wheezing and his respiratory rate was elevated. We went to urgent
care (because they won't keep us) and they gave another nebulizer
(nebs) treatment. More than anything, I wanted to ensure he didn't
get a lingering ear infection and didn't have pneumonia. His
respiratory rate was 58, 2 short of what it takes to get sent to the
ER... so they let us go home. A quick check of his ears did confirm
yet another ear infection(we get them with every head cold). We got
a prescription for antibiotics and we were on our way home. It was 3
days before the beginning of the 3 week window in which any illness
can cause surgery to be rescheduled.
I pulled C out of daycare and I
started working from home on September 10th. I became a germaphobe
for the second time in my life. I invested in hand sanitizer and
bought 10 (yes 10) buckets of sanitizing wipes. I wore masks when I
left the house and didn't let anyone come within 10 feet of C
unless I knew exactly who they'd been around in the previous days.
I'm sure I was neurotic and my husband had the patience of a saint to
put up with it. I even called the Yawkey Family Inn (which is like
the Ronald McDonald house) and asked if they had any sick people
there. I was beside myself with anxiety and looking for anything I
could control.
Toward the end of the antibiotics for
C's ear infection, I noticed what might be thrush in C's
mouth. I semi-franticallyy called the nurse line and asked if I
could start nystatin. She called a prescription in for me and we
determinedly worked to ensure C would not have thrush when we
headed to Boston.
Four days before we were to leave for
Boston, the pilot who was going to fly us there called with bad news.
Some part on his plane had failed and wouldn't be fixed for 3 weeks.
He also had a cold. There was no way he could get us to Boston. In
the 4 days leading up to our leaving, I researched and learned
everything I could about flying with a toddler and with a sick child.
It wasn't my original plan, but it ended up working OK. Delta
Airlines and the TSA in Kansas City were fantastic. I'd called ahead
and informed them we'd be there and that I was attempting to ensure
he didn't get exposed to any germs on the way to Boston.
TheMan and I had a slick system for
traveling. He'd pre-board with the special needs boarding. He'd
wipe down all the hard plastic surfaces with clorox wipes and install
the car seat. Meanwhile, I'd wait until absolutely everyone had
boarded and then I'd bring C on last and get him settled.
C was “All Done” from the moment we sat him in the car
seat. He proclaimed this fact loudly and repeatedly for the first 10
minutes we were in the air. Luckily things settled down for him
after that and it was a smooth and quiet flight.
The day after we arrived in Boston, we
spent an exhausting and exhaustive day at preop. C was checked
for everything under the sun and signed up for several different
studies going on related to OHS and congenital heart defects. We
tried to get as much fresh air as we could and spend time enjoying
the world without exposing C to anything unnecessarily. On
Tuesday, my mom and sister arrived and provided amazing emotional
support. Surgery was bumped and ended up being September 27, 2012.
It was as breathtakingly terrifying as the first one. We got through
it, the surgeon, doctors and staff at BCH work tirelessly and are
absolutely the best in the business. They amazed me with their skill
and professionalism. I cannot say enough good things about our stay
there, nor can I express how happy we were to leave. Much love to
all, but seriously, hospital life sucks.
When we were discharged from the
hospital we were left with two major issues, C's sinus node was
not functioning correctly after the surgery which led to bradycardia
and a persistent junctional rhythym. Electrophysiology (EP) is the
department that handles the electrical system within the heart. At
our consultation with them, they said not to worry about his heart
rate and to give it is at least 4 months before even thinking about
interventions such as a pacemaker (cue immediate and persistent worry
about a pacemaker now). C's heart rate would dip into the 30's
during the night and routinely was lower than 60 during the day. I
learned something I never knew. If any person's heart rate is below
60, that is one sign to start asssessing that person to see if they
need CPR. This is a very disconcerting to be in when you leave all
those lovely and reassuring monitors behind.
My fondest memories of Boston are of
C playing in the green courtyard of Harvard's Medical School.
The days were beautiful and he had so much fun. I couldn't believe
my child was running full speed through the yard seven days after he
had had his heart stopped, reconfigured and restarted. We headed
back home from Boston the following Tuesday after a followup with Dr.
Marx. Who, along with Dr. Baird, continues to be one of my favorite
people in the world.
After returning home, we kept C
out of school for 5.5 weeks until just before the expiration of the
restriction on lifting him under his arms. The first 4 of those
weeks he remained in isolation to ensure he had plenty of time to
heal before we risked an upper respiratory infection. It was
surprisingly hard to let that go and start living again. But it
became liberating in its own way. I was so thrilled to be able to
take C to the zoo. Before surgery, I was so scared that he'd
never get to see it.
In October, C went to wonderscope
with his Mimi, on adventures with his Grandma and went to the zoo
twice. Once with just Mom and Dad and once with Katie and Jake for
Boo at the Zoo! Much fun was had on both occasions.
Thanksgiving was at our house this
year. We had a huge turnout with 22 people spending the afternoon
with us. It was a lovely day and we were so happy to have our family
with us. That Saturday we celebrated my nephew's birthday, which was
a quieter affair, but no less enjoyable.
Over the 7 weeks since we let C
out of his bubble post OHS he's almost consistently had an upper
respiratory infection along with a sinus infection, multiple ear
aches and 2 stomach flus. Just before the end of the year we
received word that we do indeed need to get ear tubes and I'm working
to get us into the ENT. With all that, we've had no major respiratory flare ups and C's maintained his appetite and continued to gain weight. His sick is a lot like his healthy used to look. I continued to breast feed C 3-6 times a day through the end of the year. I can only imagine this has helped, I can't picture how often he'd be sick without it.
C had a lovely “Word World”
Christmas this year. He doesn't really understand Christmas, or
gifts, but he loves having time with mom and dad and playing, so he
counted it as a win. We end the year with a academically advanced
kiddo who could care less about the other skills he should be
growing. He's on the verge of reading, he LOVES to spell words, can
count as high as he feels like, but doesn't jump and rarely throws
stuff. He has no interest in cars or other “age appropriate”
activities. But he can spell his classmates names, knows the days of
the week and the months of the year. A bit lop sided, but we're
working on it.
On a work front, the husband and I are
both happily working to keep modern in a rapidly changing programming
landscape. We enjoy it.
What a tough year - but what a good ending! I am so glad that he's doing so well, and glad that you had the courage to seek a second and third opinion when things were going poorly where you were.
ReplyDeleteThe one thing I'm confused about: what does "Chas is only required to do something for our anniversary when we hit 100%" mean? 100% of what? I'm not sure if that's a metaphor or not.
*grin* Our wedding anniversary only comes around once every 4 years. It is a pretty good deal for him...
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