If January
is going to be any indicator of how
the rest of the year will go… then I might just retreat to my bedroom and hide
under the covers til’ Christmas. It’s been one appointment after the next,
working, continued construction of our basement, and just life in general. The
last few months have definitely made me see why lots of moms of medically
complex children give up their careers to stay home (or move to something
that’s more home based), as I swear each day I’m adding another appointment that
we have little say in. Clinics call and basically name the date and time, and
unless it conflicts with another medical appointment – I just have to take it
with a smile…cause these are specialists we’re talking about… and you take what
you can get! It’s made me appreciate the careers Nick and I choose, and the
ability we have to work around each other’s schedules so one of us is generally
available to take Evanna to these appointments (along with the additional
resources + funding we are given to ensure we have a 2nd person with us to help
facilitate the transfer). It’s downright exhausting some days. I know it has
more to do with the fact that most of this is currently “postop” related… so
while February, March and April are expected to be just busy, I really hope
just like last year, that things will somewhat calm down for the summer (pretty
please?).
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We started
the year/month off by hosting a causal brunch at our house on New Year’s Day
with some of our closest friends (which already feels like a life time ago). It
was something I had wanted to do for a while, but was unsure if it would happen
given the whole Endocarditis situation and hospital admission. Thankfully
Evanna flew through recovery, and we got home just before Christmas, meaning I
was able to salvage our New Year’s brunch plans after all.
[RESPIRATORY]
The
following week we had our Complex Airway Clinic appointment -- our first one
for 2017 (at the moment we still see them on a monthly basis). While the
Respirology team stayed up-to-date through emails over the past few months and
were kept informed on her respiratory status while we were admitted, they were happy
to see her back in clinic -- and looking so great I might add. The physician we
saw happened to be the one who did Evanna’s bronchoscopy last May, and while he
tends to be a “man of few words”, was thrilled to see Evanna. He noted how
pleased he was to find out that despite dealing with something like
Endocarditis, that she remained very stable – and even got to go home for a
little bit in-between while we waited for her surgery (until we lost her PICC line that is….).
Then to be discharged after just 11 days from surgery was just remarkable and
just another indicator of how strong she truly is getting. While in clinic,
they monitored her CO2 levels, and it stayed within a range of 28-33 (she use
to sit in the 50s). Nick later told me that they average person sits between
35-45 and so this is one of the very first signs of being “over-ventilated”,
and it’s time to proceed with another bronchoscopy to finally see if Evanna is
ready to handle vent decreases (which the Respirologist agreed with). So once
they consult with our ENT to see when he’s in the OR (they don’t necessarily
need him for the procedure, but would like him in the “area” to pop in and
quickly see Evanna’s trachea while they’re scoping her), and will book a date
as soon as possible. From my understanding, we are currently aiming for March
1st, with a backup plan/date of April 5th – cause as you all know, it somewhat
takes a “bump or two” before we actually see a procedure happen around here. Oi
vey.
On January
19th, we saw a special developmental pediatrician that we were referred to by
the genetics clinic back in September at the Child Developmental Centre. I was
initially told to expect a 3-4 hour appointment…but thankfully we were only
there for about an hour. We didn’t learn too much that we already didn’t know,
and essentially confirmed that we are already accessing the appropriate
supports we currently need for Evanna. The pediatrician explained that she
see’s many families with developmental issues, but most of them don’t have
quite the extensive medical background that Evanna does – so sometimes the
appointment can be quite lengthy as it goes into how to access certain programs
– however, because of “all the medical stuff”, we don’t really have to
fight as hard for certain resources and it all kind of “just falls into our
laps” (as parents we still have to inquire and request for referrals to be
sent…but for the most part we are immediately approved given our medical
situation…another trach silver lining perhaps?). There were a few things that I
did take away from this appointment that were very important to recognize as we
move forward with Evanna’s care and development. The first thing the
pediatrician said is we’ll probably never know if Evanna’s delays are actually
“22q” (her chromosomal syndrome)
related -- something the pediatrician said she specializes in; and for the most
part, we will consider all of her delays medical related (very prolonged
intubation period, very chronically sick until about Spring 2016 and the
extensive sedation medication Evanna was on over a 12 month period). Next
(which is somewhat common sense…), is that children cannot develop when they’re
sick. So though we’ve been home since November 2015, Evanna was still
technically pretty sick those first few months (there are times I wonder how we
ever survived that initial period we were home lol) and it’s why we really
didn’t see much development until about April/May. However, if Evanna continues
to remain “healthy” (or as I always say “Evanna healthy”), we should continue
to see lots of momentum in her development. Thirdly is that the pediatrician
noted that Nick and I seem to be very realistic when it comes to our
expectations. I guess she often see’s parents who come to her very frustrated
and with somewhat unrealistic goals – and so she was happy to hear that we
understand our complicated situation, know things will take time and though we
will continue to push Evanna, it will have to be at an acceptable pace. To
quickly note – based off her assessment, minus communication, the pediatrician
placed Evanna at about 12 months of age developmentally…which closely matches
to our time home (minus those first few months) and what I was hoping to hear.
On Facebook I see a lot of parents absolutely devastated with these types of
assessments from developmental appointments, but I feel like Nick and I are
pretty realistic and so we weren’t thrown for a loop or caught off guard with
anything that was said to us.
Lastly (and
most importantly), was speech + language. While we think Evanna is making great
gains in regards to physical therapy (she got fitted for a walker a few weeks
ago!…but more on that later), the pediatrician feels the one place we might
experience a lot of trouble will be her communication…and that’s due to three
reasons: first is “22q kids” tend to take a little longer to develop this skill
and it’s very well-known they tend to not talk until they’re a little older.
She then went onto explain that there’s a certain “window” that these skills
begin to occur, and due to circumstances outside of our control, we basically
missed that window (…and here’s where I begin to wonder if maybe Nick and I should have proceeded with the trach a lot sooner
than we did….oh well – hindsight is always 20/20). Finally (and the most
obvious), is the mechanical obstruction that the trach presents. Due to all of
this, she definitely would like to see other tools incorporated that will allow
Evanna to communicate with us -- and the hope is that once a few of these
obstacles are removed, it’ll allow for an easier transition. Sorry, I got more
detailed then I had originally intended too, but it’s nice to take the time to
properly explain things. Yes, we definitely have our work cut out for us and
#Evannasroadtorecovery will be years in the making, but it will all be worth
it.
Last week
was busy seeing our speech-language therapist where she showed us a few of the
tools that the developmental pediatrician talked about and then getting Evanna
fitted for a walker! Just like the standing frame and exersaucer, she
absolutely hated it (girl hates change), but we know she’ll learn to love it in
no time too. We’ve recently come to a place where the standing frame and
exersaucer are no longer challenging for Evanna (she almost gets too excited when we pull them out to put
her in), and so this has become the next natural step. We are now waiting on
AADL funding to go through (though there is still a large portion that Nick and
I still have to cough up…) – which takes about 4 weeks, to which it will then
be delivered to our house to begin implementing into Evanna’s daily routine. We
will still continue to use her standing frame and exersaucer as they provide
great weight-bearing opportunities, but my hope is that over the next yr we
will slowly transition from the standing frame to the walker exclusively. Baby
steps!
[CARDIOLOGY]
On Thursday
[January 26] we saw our cardiologist for our official postop checkup and talk
about Cath plans. The ECHO went very well and the tech was able to get a ton of
amazing images! This particular ECHO tech is one we are extremely familiar with
as he’s done probably about 80% of Evanna’s Calgary ECHO’s -- and we just love
it because we’ve been able to build a nice relationship with him over the
years. In fact, back in April when we were dealing with that major sternotomy infection – there was
a lot of confusion surrounding a “sedated ECHO” to take place while Evanna was
getting a CT done, but it was causing a lot of logistical issues and headaches
at the time. Thankfully this ECHO tech knows Evanna very well and called up to
the unit to explain that Evanna does NOT need to be sedated for an ECHO because
she lies very still and normally is pretty easy to perform ECHOs on. He then
came up to the unit with his equipment and immediately did the ECHO to prove
his point – it was awesome! ANYWAYS, this ECHO went extremely well, and the
tech got a LOT of amazing images of Evanna’s heart, and Megan (Nick’s sister
who was helping me for the day) and I were laughing at the tech’s enthusiasm when
he was hitting the “perfect spots” and getting some wonderful images of her new
valve, her collaterals (which is rare to see from Ultrasound), and left
ventricle. It was a fun exam to say the least.
[CALIFORNIA UPDATE]
After the
ECHO, we met with our Cardiologist to discuss how Evanna has been doing, and
overall was happy to hear that things have been going better than ever. We
decreased her Lasix (it’s a diuretic med) to just once a day and will probably
take her completely off of it the next time we’re seen in clinic. We discussed
what’s been going on from an infectious disease standpoint, as well as
respiratory – and she was ecstatic to hear about the potential progress we’ll
be making over the next several months. We then discussed plans for the Cath that
we still need to do that was
requested by Dr. Hanley (the Californian surgeon). We don’t need to “present”
Evanna to cardiac conference in Edmonton again -- as that was already done back
in the fall, but now that Evanna has been off antibiotics for several weeks, we
just need to do ONE more blood draw to check that things remain “all clear” and
our cardiologist will send the referral for the Cath…. which means we’re now
aiming for a March date. I was slightly disappointed with this timeline, and
overall hate just how much impact Oct/Nov/Dec’s Endocarditis episode has had
over this California timeline (not to mention all the surgery bumps due to the
terrible RSV season Alberta experience this past winter that created a huge bed
shortage that we definitely felt the effects of). Regardless, we’re back on
track and I really feel like patience is truly becoming a virtue of mine (and
if you ask my parents – that’s quite an accomplishment lol).
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So, what’s
been going on this week? WELL, I received a phone call last Friday from one of
our Respirologists about a concern we’re having in regards to some ventilator
alarms. For about a month and since our last Complex Airway Clinic appointment
that we had several weeks ago -- we’ve been dealing with an increase of alarms
coming from Evanna’s ventilators. The one of most concern is the “apnea” alarm
(she’s trying to breath below a set rate
while sleeping…. so I assure you it’s not a “true” apnea situation and she’s absolutely
just fine), and so between that AND our CO2 results from our last appointment,
we believe Evanna is being “over-ventilated” and growing out of her current
settings – which is a very GOOD thing! They originally tried to get us into the
PICU on Monday for some vent tweaking…but of course that didn’t happen…we tried
again today….and now we’re trying for an admission TOMORROW (trust me, the
Respirology team is not happy with ICU communication right now). I am so over
this whole “gotta be bumped at least 2 times” before SH#% happens – especially
when you consider the bronch and Cath coming up in the next few months that I
just KNOW is going to have similar scenarios…. and so I’m currently having a
“FML” moment right now lol.
Lastly, Nick
has been kept very busy with working on the basement suite (with help from his
brother Ryan), and is literally is down there whenever he has a moment to
spare. Evanna obviously complicates that, and unfortunately he can only get to
it if I’m home to watch her or we have a nurse at the house. It’s still coming
along quite nicely (painting is finally done, and kitchen cupboards are all in
-- including the countertop and backsplash), but we’ll be so glad when this
project get completed and we can finally focus on our own home (and boy do I have lots of ideas that I want to see happen
lol….lucky Nick). I’m stuck trying to figure out a simple birthday theme for
Evanna’s 3rd birthday (I’m open to ideas – so if you have any, feel free to
pass them along!), and overall doing my best to keep my head above water.
Yesterday
kicked off HEART MONTH, and while recent events have prevented me from planning
anything major to aid in raising awareness, I was still able to get a few
projects and collaborations put together –so stay tuned! Currently I have a
little contest running with @MIGHTYWARRIORDESIGNS over on my Instagram account, and $2 from all sales of their Heart
Collection is being donated to the Stollery Hospital Foundation. Cheers!
xo The
Irvine Family
PS. If you
powered through and read through this entire post (and somewhat stayed focus
without your head spinning from information overload), then B R A V O!
Seriously! I know I throw a LOT out there, but I honestly do try my best to
break things down for those who aren’t familiar with the medical world (and to
be honest – it also helps me to write all our current happenings, as it helps
me take all my jumbled up thoughts and arrange it neatly on this blog). If
something is still confusing, please feel free to ask questions, as I don’t
mind explaining things further!
PS2. I want to thank Jody Frank and her Grade 3
class from Montreal for all the lovely Christmas cards that were sent to Evanna
back in December (I think they came JUST in time for Christmas too!). I love it
when our story is shared to both help inspire and provide a little perspective
in a world that can sometimes be so full of noise. We have been recipients of
so much generosity over the years, and no matter how big or how small – each little
act of kindness has always been greatly appreciated. Thanks again xoxo