We haven’t posted in a while… we’ve been busy enjoying life
with our family. Who can blame us for
that, right? Ha! Isn’t that what we’re all busy doing this
summer? Packing as much life into our
days as possible? I’ll admit that we’ve
not filled all of our days with wonderful adventures. We’ve had plenty where we don’t want to do
much and we lounge around too long. We’ve
had some where Brandon spends too many hours studying for his NCLEX (still
waiting for his ticket to test). There
were days when I sit at my desk much longer than I should and cut into “family
time”… but hey, we all have those, too.
On the plus side, we have had lots of days so far this
season where we played outside. We are
helping the boys learn to ride their bikes.
We let them play in their pool and let Ellie play in her little pool,
too (read: it’s really a little Rubbermaid container that is small enough that
she can’t fall over in it). We’ve had
sparklers and campfires and many nights at the playground. We've done the festival thing here and there (food trucks, parades, rides, etc.). We’ve gone camping (once) and just returned from a great vacation with
family. Summer has been amazing so
far. So we have no complaints here. Brandon finished school last month, we are
trying our best to keep the boys on a schedule, Brandon is just starting a new
career which will bring with it a totally new schedule for him and our family,
we are looking forward to moving in the next month, I landed a new job within
the company I have worked for since 2009, and Ellie… she’s learning and growing
and proving that nothing is impossible for her. We have a family reunion and our first Down syndrome association family picnic coming up soon, too! Things are busy and crazy and exciting… a little stressful at times… but
stressful in a good way, that’s for sure.
Ellie and I watching fireworks
This summer is good – dare I say GREAT! But things are moving along quickly and I can’t
believe that July is already here. For
so long, July has been off in the distance, lurking ahead of us… waiting around
the corner. We’ve been anxiously
awaiting July because July brings hope of a new normal for us… but July also
brings a day of sedated procedures for Ellie (next week) and another major
surgery on the 26th.
Ellie is absolutely no stranger to sedation or surgery, but
she hasn’t been fully sedated for almost a year (last September she was sedated for
an outpatient scoping procedure) and she hasn’t had surgery since we were in
Boston in May of 2015. The surgery she’ll
have at the end of the month is intense.
They’ll harvest cartilage from her rib cage on the right side and they’ll
use that cartilage to expand the ring of cartilage just below her voice box in
her trachea. This means they’ll cut the
ring of cartilage in her throat at the front and back and use the rib cartilage
as a spacer on the front and back side to make the ring larger. See the image below. Ellie will have the surgery that you can see
in the bottom series of images where there are anterior and posterior cartilage
grafts. While this is a major surgery…
it’s not “open your chest up and reconstruct the inner workings of your heart”
kind of surgery. It’s not “your heart
and lungs will be stopped for four hours” kind of surgery. I’m still scared and there are still serious risks involved (just like any surgery)… but compared to what Ellie’s been through in the past, she can
totally handle this! She's had a few bouts with bradycardia (slow heart rate) over the past week... only one night that was really concerning, though. I normally wouldn't be too concerned about it, but of course, Ellie has to do these things just a week before getting sedated, so cardiology had her wear a Holter monitor for 48-hours. She didn't have any episodes while on the monitor. Instead, she saved those for the first night off the monitor. I'm sure she'll be fine for sedation next week, her EKG looked okay this week. With the type of repair she has with her heart, there is always a risk that as she grows, the tissue used to repair the septum won't transmit a signal as normal cardiac tissue would. So there's a chance that as she grows, her heart rhythms may change. We're keeping an eye on it and right now (other than a few nights where she threw us some curve balls), she seems just fine. She just likes to keep us on our toes... turkey. Cardiology said the results from her Holter looked just fine, though.
Back to the surgical plan: her trach stoma is just below the surgical site here, and
that should actually help her heal a little faster. She will not need to be intubated for the
procedure. That’s a great thing. Once she heals (however long that is), we’ll
be able to start capping her trach and seeing how well she’s able to use her
new airway. Right now, capping is
absolutely not an option. Her current
airway is too tiny to breathe in through.
We can use her speaking valve because she is strong enough to force air
up and OUT of her airway, but she’s not strong enough to draw air IN through
her upper airway now. That’ll be
something she’ll be able to do after surgery.
If that’s successful, she’ll have a sleep study and some other trials
and such to do… and eventually, we can start to look at life beyond her
trach. What a thought, right? We have no idea what this timeline looks like
right now. I’m hopeful that this could
happen within a few months of surgery.
But there may be other things that we need to look at in this process
(tonsils, etc.). We’re taking it one
step at a time, but this is a very big step, y’all.
And as much as I LOVE her Gtube (never thought I would ever
say that I LOVE a feeding tube… but let me tell you, they’re amazing), it looks
like we’ll need to get rid of that once we get rid of her trach, too. And once that’s gone, we’ll have a baby that’s
free of accessories – WHAT?? I mean, I’ll
forever hold other babies and adjust them a certain way in my arms as not to
accidentally pull their G tubes out (if I’ve held your baby/toddler in the past
two years, I’ve done this to them… sorry, it’s a habit). We’ll have to get rid of her G tube because
Ellie has decided that it’s her new favorite thing to pull at and pull
out. Gross! If we don’t keep her in a onesie, she’ll pull
that sucker out several times in a day and hand it to me like she’s doing me a
favor. Not cool. On the plus side, it’s created a learning
opportunity for me to calmly teach our boys all about tubies and how they go in
and what all I need to put them back in Ellie’s belly. My boys know entirely too much about tubies
and trachs. In fact, they recently asked
me for coloring pages where they could color their own Gtube buttons. We live in a weird little subculture over here
– don’t judge us. On the plus side of
this, we don’t really NEED her feeding tube anymore, either. Ellie still gets one tube feed at night, but
this is only because GI is really hesitant to pull all night feeds at
once. We have to take baby steps any
time we want to make changes to her feeding regimen. She’s taking all of her food by mouth (unless
it’s the week we were on vacation and she decided that there was too much going
on for her and she had no interest in eating or chewing or any of that
business). And thus… feeding tubes are
my friends. But just like any toddler
who is able to eat by mouth, she will eventually eat when she’s hungry enough…
I’m sure she’ll be fine without her tube.
I’ll just have to get over not having that amazing safety net that it
has provided for so long… and cherish not having to give her medicines by mouth
until we have to take it out.
Those are my thoughts as we march forward this month. We have two friends that are also facing
major surgeries next week… please keep Tillery (going in for surgery on her
skull) and Aberdeen (another open heart surgery) in your prayers, too. It’s a very big month for our friends. We also have a friend who just gained her
angel wings this past week. Please pray
for sweet Sofia’s family. Her smile
brightened our world and her momma was a constant source of strength in the RMH
and she helped us navigate the world of trachs and ventilators. This was a momma who (in the midst of
spending years in the hospital with Sofia) secretly worked with the concierge
team at Cincinnati Children’s to surprise families by buying them
lunch from any local joint they chose.
What a wonderful surprise this was!
Chipotle in the middle of my work day during a crappy week in the
hospital?? What a way to brighten
someone’s day. So… if you really want to
pay it forward, call Best Upon Request at Cincinnati Children’s, offer to buy
lunch for a family having a rough day. I
promise they’ll know of families having a rough day… and the Best Upon Request
team does all of the running for you… they take care of all of it. Do it in honor of Sofia and her sweet
momma. Do it because those parents will
never forget the kindness of a stranger buying them lunch. I promise!
That’s Hustling Kindness!! If you want to do something a little smaller, buy a few meal cards from them and have them deliver them to a family in need. Having a lunch ticket delivered from a stranger is awesome, too. Let's keep Margaret's kindness going, y'all!
And on a really bright note, here are some pictures from our
vacation last week. I was having some
serious anxiety about taking a trached baby to the beach. Sand + water + an opening in your neck that
leads straight to your lungs is certainly a recipe for disaster. However, with months of preparation and the
encouragement of family, friends, nurses, and the respiratory therapist with
our supply company, we ventured out to the beach and the pool and we had a
wildly successful vacation. My family
has been traveling to Fripp Island since 1983 (when my mom was pregnant with
me). Ellie’s first trip was in my belly
when I was 30 weeks pregnant with her and this was her first opportunity to put
her piggies in the sand. We stayed in a
house big enough for the 28 people in my family and my dad’s sister and her
family traveled down at the same time to join us. It was amazing and a much-needed break. Can we go back yet? Until next time, Fripp…
Baby on the beach... trach covered, sand-free mat under her "pool"... she loved it
And the pool - she was crazy about the pool, too
The boys enjoying the waves with Daddy
Ellie petting a gator at the Nature Center.
The boys got to hold snakes and visit the turtle day care. Adorable!
The boys got to hold snakes and visit the turtle day care. Adorable!
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