May is shaping up to be a VERY busy month, so before things
get crazy, I want to quickly blog about our unplanned April admission as well
as offer a few new updates. For the most part it’s just the details surrounding
our admission that I already posted on my social media accounts during the
actual admission….so if you’re here just for the new updates, skip to the
end (though I do talk about some things that weren’t included in those social media updates).
On April 1st, Nick noticed this bump on the top half of
Evanna’s sternotomy and it was even stretching her scar out. We immediately
called cardiology, but because nothing else was wrong and it didn’t seem to bug
Evanna, they chalked it up to a possible buildup of fluid (something that often
happens in an area of scar tissue). The cardiologist just told us to keep a
close eye on her, and to call them again if her situation worsens. We also had
a planned ICU admission the following week, and so if they bump was still
there, then the ICU medical team could thoroughly investigate it.
On Monday (April 4th), while I was at work, Nick noticed a
second bump further up Evanna’s chest and very close to her tracheostomy. It
rapidly grew, the colouring was very concerning and it looked like there was
more than just “fluid” underneath, however – Evanna still didn’t seem bothered
by anything. Just after lunch, I
received a phone call from the respirology clinic notifying us that due to a
bed crunch, our bronch/ICU admission on April 6th had to be canceled and they
would let us know when it could be rebooked. Bumps in the medical environment
happen all the time, (we’ve experienced many throughout our medical journey) –
but this one definitely bummed us out for several reasons:
1 – we’re extremely eager to have our Calgary medical team
see Evanna’s airway for themselves, as I feel it will ease their concerns about
decreasing her ventilator settings and be more aggressive in weaning Evanna off
the vent. Our Edmonton ENT (Dr. Eksteen) who did Evanna’s tracheotomy back in
March 2015 felt Evanna would only need the trach for 1 year based on the
bronchs he did (as they produced somewhat decent results). I know the “one year
timeline” will not be the case anymore (we’ve already surpassed the one year
mark…lol), but they haven’t decreased her settings even ONCE since the initial
surgery. I know Evanna getting sicker at one point after her tracheotomy didn’t
help the situation (ie. her septic shock episode last July), and our goals were
quite different last year then it is now (getting her on stable settings so we
could just go HOME), but enough is enough.
I’m in contact with a few families whose journeys echo our
own and I find myself annoyed at how far behind we are (but absolutely thrilled
at their progress as it gives me an idea where we’ll be someday). I know “every
child is different”, but you also can’t go and ignore the similarities either.
Their children are with months of Evanna’s age, either have exact or very
similar heart defects, and also have 22q like Evanna. While Evanna has a
handful more “medical events” attached to her, I feel we are very behind as to
where we should be. Again, what’s frustrating is that the Calgary medical team
doesn’t even have bronch results to go off (and yes, I’m confused as to why
they haven’t looked at her Edmonton bronch tapes either), and other then
getting to a stable point to go home, haven’t made a single step forward. While
I’ve come to terms that we will be living the “trach life” for a few more
years, decreasing setting and SPRINTING off the vent can make things so much
easier and much more manageable for our family in the near future.
So after super, Nick and I discussed the current situation,
and while Evanna was acting fine, we couldn’t ignore it anymore – especially
because of it’s extremely close proximity to her trach (like I stated in last
week’s blog post – you don’t mess around when it comes to the airway!) and we
no longer had an opportunity to have a medical professional assess Evanna’s
sternum. So we called the cardiologist on call again to inform him of our
decision (which he understood and agreed with), packed Evanna up and drove
directly to the emergency at the Alberta Children’s Hospital. We actually were
kind of joking on the way there that “if Calgary wasn’t going to give us a
bed…we were going to take one instead”. With Evanna being so stable, I expected
to be treated somewhat like a regular family and “wait our turn”, but after
being triaged, we were immediately taken to the back and seen by the ER
Pediatrician within 5 minutes (cardiac + trach + vent = VIP treatment
regardless of our status apparently). We were told that we made the right
decision to bring Evanna in (we’ve spent more than our fair share of time in
hospital, and with the resources we have access to at home, we never want to be
at the hospital when we don’t have to be – so it was somewhat an “internal
struggle” on what we should do), and we were informed they would indeed admit Evanna.
They did consult with the PICU as per trach/vent protocol, but with Evanna
being so stable meant the intensivist couldn’t justify an ICU bed at that point
in time, and we could precede with going to the unit instead! We did have to
wait for a bed to clear in the “vent hallway”, so though we brought Evanna in
around 8pm, we couldn’t transfer to the unit til 3am after some patient
shuffling could take place.
On Tuesday (April 5th) they did an ultrasound to confirm a
buildup of something (fyi – not one lab result came back with a positive infection throughout our entire admission), and decided to proceed with a CT the
next day to see how deep it was. Though an Edmonton transfer was lightly mentioned
in passing if the infection was deep enough, based on Evanna’s “clinical and
stable status”, we didn’t think that much into it (besides – those days were
behind us – right??). However, after the CT on Wednesday, they consulted with
the cardiac surgeons in Edmonton, and all of a sudden things went from 0 – 60
and a transfer was immediately planned. I quickly called the Ronald McDonald
House to put my name on the waiting list, but fortunately they had one of their
single rooms available and was told I could check in the moment I arrived
(we’re a “returning family”, and so we don’t have to go through the normal
check-in process). I then called my boss to let her know that I would be away
for a little while, and would keep in her informed of when I could return to
work. Finally after calling my parents, the transport nurse and RT from ACH’s
PICU came up and began to pack Evanna into the stretcher for transfer, while we
emptied her room (the unit charge nurse mentioned that this was the fastest
nonemergency transfer that she’s ever seen!). Once the transfer team left (with
instructions on how to keep Evanna happy throughout the flight – movies,
soothers, and her favorite toy… suction catheter wrappers!), Nick and I quickly
drove back to our house so I could pack (Nick actually stayed behind as he had
to work, and in all reality, Evanna was not “sick/critical”, and this situation
is somewhat normal to us). I was back on the road driving up to Edmonton within
45 minutes, and finally had a moment to process our evening and all the events
that had just occurred.
I arrived in Edmonton just before midnight, and after
checking into the Ronald McDonald House (basically I just signed in to get our
room keys), I raced over to the Stollery Children’s Hospital to see how the
transfer went, and how Evanna was settling in. When I walked onto the unit, the
nurses were trying to get some blood out of her scalp and Evanna was one very
angry baby (I would be too if someone was sticking needles in my head...poor
girl). Once they were done, one of the fellows (who I just love), came over to
talk about the plan and ask about her current medications, as they haven’t seen
her since last June! He then informed me that Evanna would be an “add on” for
surgery the next day (which we really weren’t expecting), and then he marveled
at how big and “great” Evanna looked. The last time that he and all the
Stollery nurses saw Evanna, was last year when Evanna was still incredibly
sick, so they just couldn’t believe how good she looked despite our readmission
to the PCICU. Once things settled down, I decided to finally leave and get a
little sleep, as I knew the next day would be a long one.
On Thursday (April 7th – our wedding anniversary no less),
the day started out with catching up with some of my favorite intensivists,
nurses and RT’s. I truly consider the Stollery PCICU my second home, as I practically lived there for over 8 months, and the staff have truly become like
family. As people began to learn about our readmission, they would pop over to
say hi and be in disbelief at how much Evanna has grown and developed. When
Nick came up later that weekend, he joked that I was having way too much fun
and could tell that I was in my “element” (such a “medical mama” trait). Later that afternoon, Dr. Ross & Dr.
Al-Aklabi took Evanna back into the OR (as our primary cardiac surgeon Dr. Rebeyka
was away, but I adore Dr. Ross and Dr. Al-Aklabu just as much, so I didn’t mind
that they were doing the surgery). They opened up the bottom bump, cleaned it out, and
then tunneled upwards to drain it (with the second bump being so close to
Evanna’s trach, they didn’t want to actually cut up into that area). Overall,
the total procedure took about 20 minutes and she was back into the PCICU in
under an hour. One of my dear friends who lives in Edmonton arrived around the
same time Evanna got back from the OR, and once Evanna was settled (she was
kept sedated), she took me out for dinner to help celebrate my anniversary (as
again, Nick stayed back in Calgary) which I greatly appreciated!
Friday (April 8th) entry: Just like a NORMAL ICU stay should
be, things are progressed quite quickly »» which was a concept Evanna could
never grasp the first time around lol.
Highlights from the day:
- They took down the surgical dressing and added a
"wound vac" (the black thing you see on Evanna's chest). This is
suppose to aid and speed up the process of healing.
- Her morphine infusion was discontinued that morning and
she's was just on Advil & Tylenol around the clock -- which is just amazing
in itself (it took a year before we could finally get Evanna off sedation
medication last year).
- Infectious Disease decided that because all her labs came
back negative, to take away the two major IV antibiotics and just leave her on
one. This was been the MAJOR topic of discussion, as they have decided to
officially call it "soft tissue mediastinitis", but because it didn't
hit bone, they can put her on a more gentle antibiotic. HOWEVER, because of
that diagnosis, they decided that she WILL be on a 6 wk antibiotic course.
- This means that when they are able to (which might have to
wait til Monday), they want to insert a PICC line for this purpose, as
peripheral IV's don't last very long.
- She is back on FULL feeds, and almost back to her bolus
baseline.
- By the end of the day, she was back in her HOME VENT,
which was just fantastic.
- They will do a wound vac change on Monday and then again
on Wednesday. Hopefully after that we can see about transferring Evanna back to
Calgary.
Our weekend in the PCICU was fairly boring (though we did take a quick moment to ourselves to celebrate our anniversary), and the following Monday they inserted a PICC line
for the IV antibiotics (with our primary intensivists Dr. Cave acting as the
anesthesiologist). Dr. Rebeyka had returned to work, and after giving him a
quick hug to wish him Happy Birthday (yes, that it how well I know the man
lol), we briefly discussed Evanna’s future and what he would like to see done.
While they had hoped to transfer us up to the ward at one point, due to no beds,
we ended up just hanging out in the PCICU until we were stable enough to
transfer back to Calgary.
Nick and Evanna so happy to be reunited! |
On Thursday (April 14th) they were finally able to secure a
bed on Unit 2 for Evanna at ACH, so they transferred her back to Calgary.
Coincidently Nick happened to be working that day, and so he actually got to
help pick Evanna up (EMS isn’t really responsible for the patient and parents
go on transfers all the time – just like I did last summer). I arrived about an
hour later as I had to drive our vehicle back to Calgary, and once she was
completely settled and our regular homecare nurse arrived for the night, I left
to unpack and get some sleep.
The week following our transfer back to ACH was filled with
some ups and downs as Evanna's wound didn’t heal as quickly as we had hoped (so
plastic surgery became a regular visitor), but once we were able to switch
Evanna over to her oral antibiotics, we were given the go ahead to take Evanna
home on Friday April 22 promising that we would bring her back if things continued
to not improve. While her chest wound is still not 100% perfect to this day, it
remains manageable (cardiology and plastics have seen it during our regular
appointments since our discharge) and her antibiotic course will end around May
22 (if I remember correctly).
Discharge! |
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Alright – time for updates:
- during our admission, after consulting with both our
dietician and the Stollery PCICU dietician (whom I just adore), we’ve decided
to switch Evanna from a formula based diet to a “blended food” diet, as she
isn't getting the appropiate amount of protien. We’re still very much on a
diluted concentration based on how much support Evanna receives from her home
ventilator, but hopefully over time as we wean her off the ventilator, that
will also change.
- Evanna is continuing to do very well in her physical
therapy progress. She can sit up without any support (though we still have to
place her in that position…so we’re working on that), but she’s such a little
turkey anout it – unless she can watch a movie or be VERY distracted (funny
enough, me taking her picture is one of those instances), she refuses to sit
“just cause” lol. Basically, if we want her to work hard, she wants to be
rewarded for it.
We’ve made huge gains with her standing frame. In the fall,
she could barely handle 10 minutes in her standing frame, and would cry and
desat, forcing us to take her out. Now, it only takes one person to put her in
(where it use to take the two of us), and she now can easily surpass the 1 hour
mark. This also reflects in how well she does in the exersauser – she now can
twist and turn super easy (which unfortunately causes her to get tangled up
with the vent tubing from time to time), and loves to bounce in it. I’m trying
to get Evanna to put weight on her feet on her own, but at the moment, she has
no interest…so I’ll just have to keep trying. The other main thing we’ve been working
on is gaining shoulder strength, as that will lead to crawling and gaining
more independence down the road.
- last week Evanna had another FEES test. This is where our
ENT inserts a scope (with a camera at the end) to see essentially see what
Evanna’s throat looks like. While there has been marked improvement since the
December FEES test, unfortunately we have not been given the go ahead to be
more aggressive in her feeding therapy. While our ENT is still okay with taste
therapy, that’s about all we can do for now. He stated that Evanna somewhat
“refusing to eat” is kind of an “instinctual” thing, and basically it’s like
she knows it’s not safe to eat. He also informed us that Evanna is now getting
to big for the FEES test, and we now need to get to a place where Evanna will
willingly swallow so we can do a barium swallow study….so basically we have our
work cut out for us for the next while.
- the bronch! So like I talked about earlier, this has been
the BIGGEST focus and topic of discussion for the past few months. We are eager
to actually start making gains in Evanna’s ventilator weans, and so the bronch
cancellation was a huge blow for me. It has now been rescheduled, and it will
actually take place next Monday (May 16th)! I am very confident that this one
will not be cancelled as there has been better communication between all the
different disciplines, and this procedure has been recognized as a necessity.
This will be our first one since our main discharge, so I have no idea what to expect (and no one knows
how Evanna will handle it), so I’m not quite sure how long we will be in
hospital for. My best guess is 2-3 days, with the first night definitely being
in ICU (as getting an ICU bed has been the biggest hold up).
So PRAYERS for a good bronch that will show the Calgary
medical team that Evanna is strong and very ready for some significant changes!
I of course will keep everyone updated and informed of what happens while we
are in hospital through Instagram and Facebook updates!
- on a nonmedical front, I’m busy getting ready for Evanna’s
birthday party at the end of the month, and when I quickly drove by our new
house last week, I saw that they have finished with installing all the drywall
and it’s already been “taped and mudded”. We still don’t have a possession
date, but my best guess is still July. I’ve been working lots and life has just
been plain busy!
That’s all folks!
xo The Irvine Family
She is adorable!!! Praying for an awesome bronch. We are going through a lot of the same stuff, though not the bump. Big hugs!
ReplyDeleteThanks Angie. Just would like to deal with ONE less piece of equipment - you know what I mean? lol xo
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