I tried to sleep, but the CICU feels less like home than our
last room – understandably so. We turned
on the lullaby channel to drown out the sounds of monitors beeping and
alarming. When I got up a little before
5am, the nurse was holding a bink in Ellie’s mouth and said that she seemed
really hungry. She was smacking her lips
like crazy and was restless. Looking at
the monitor, her breathing, blood pressure and heart rate were up. The nurse said she'd taken her temp and it was up at 101F as well. I immediately said, “She’s storming… let’s
get some ice”. I think the nurse felt
awful because she’d been trying to soothe her for 2 hours and didn’t recognize
this as a storm. In this unit, they see
autonomic storms caused by traumatic brain injuries (which is usually the cause
of storms). The storms she was used to
seeing were much more severe than Ellie’s, which is why she wasn’t more
concerned about her activities. On the
beta blocker (propranolol), Ellie’s storms are muted, but the cardiologist said
they can still occur and we shouldn’t be surprised to see them after or during
stressful situations. I’d say yesterday
was a stressful situation for our bug.
After trying the ice on Ellie, it wasn’t too effective in calming her
down – that’s a first. They gave her the
rescue drug, Ativan, to calm the storm.
She was able to calm down considerably.
Now we know that stress can throw her back into storms, so we’ll need to
be very diligent about making sure that all of her caregivers know what Ellie
looks like in the midst of a storm and what to look for. After surgery, it’ll be critical to treat the
storms as they brew instead of hours into them.
Even at the peak of this storm, she was nowhere near the peak of her
storms before she was on beta blockers.
In morning rounds, the resident made sure everyone was aware of what
Ellie’s storming symptoms look like... she's supposed to be treated with the rescue drug for any storm lasting 30 minutes or more (they usually last 3-6 hours).
Ellie is super tired here, so she looks a little out of it.
She's like, "Mom, can you tell them to stop putting things in my nose, please?".
Shortly after rounds, Dr. Hirsch (who did the cath
yesterday), came in to talk with me. He
ordered another ultrasound on Ellie’s veins and arteries because they were not
able to feel her pulse in her feet (and her feet are cold). They used a Doppler to locate the clot they’d
found last night, but couldn’t locate it with the Doppler – so another
ultrasound is necessary. He then came
over and talked to me about his concerns.
He said that Ellie had a lot working against her in regards to her
airway… or rather, “almost anything that could
impact her airway is impacting her
airway”. She has Down syndrome, making
her tongue unusually large where it can obstruct her airway. Down syndrome can also come with a
“floppy” trachea… a.k.a. tracheomalacia.
She has a congenital heart defect, which contributes to pulmonary
hypertension. She has autonomic
storming, which throws the rhythm of her breathing off entirely. ENT found that she has brachiocephalic stenosis, which means that the artery that runs along the trachea puts pressure on the trachea and contributes to the collapsing of the airway (kind of like a big, heavy hose would sag the sides of an inflatable pool as you filled it). Finally, her sleep study showed that she has severe obstructive sleep apnea,
which physically obstructs the airway.
So… there are a lot of things at play here and an unstable airway
contributes to pulmonary hypertension… which in turn, is detrimental to the
type of repair they’ll need to do for Ellie’s heart. UGH! Can you see how it's all related and we're not sure which "evil" to tackle first??
Dr. Hirsch explained that there are several options to stabilize her
airway, the most invasive being a tracheostomy (where there is an opening on
her throat that leads to her airway).
There are less-invasive methods (which we’re rooting for, of course)…
but he wanted to prepare me for what was possible. He ordered another test (an airway impedance
probe) to see if she’s aspirating – that’ll be a 24-hour test. They also ordered a video swallow test from
speech pathology. I think that’ll happen
today as well. I’ve not read up on
either of these yet, so excuse me for being a little clueless at this point. We also found out that pulmonology is planning another sleep study on Ellie, this time with titrated oxygen supplementation. This way, maybe they can come up with a regimen that keeps Ellie's oxygen saturation stable during sleep by simple putting her on a machine to assist her breathing at night. That doesn't sound too bad. I don't know if they'll get this test done this week, though. We'll see.
Dr. Hirsch also said we’d likely need to do a G tube before
heart surgery, as well. A G tube is
similar to Ellie’s NG tube, in that it’s a tube that goes into her stomach to
feed her. The difference here is that a
G tube will have a port on her belly instead of coming up and out of her
nose. This doesn’t scare me,
really. Not the insertion, itself. I’m worried about the implications of an
opening to the gut a few centimeters from where an incision would be for
open-heart surgery, of course… but maybe we’re looking at a different type of
surgical incision than before. I won’t
know until after the surgical conference next week. Hmmmm… I wasn’t ready to hear all of
that today. I’m ready to go back to the
cardiac floor, recover, and head home.
However, I know that we’re in the right place with the right medical
professionals on our side… so I’ll patiently wait to see what the next move
will be.
While this is a lot to digest, again, I sent B a text this
morning saying, “Praise God that we’re only dealing with what we deal with
every day. The ICU is a wake-up call for
how incredibly fortunate we are. I just
heard an AED machine in the room next to us say ‘stand clear’, then ‘shock
administered’. Ugh! Praise God that our reality is not like THAT”. The kiddo next door doesn’t look any bigger
than our bug. The one in the other
adjacent room has at least twice as much intervention and has been here since he was born just 11 days ago. As I meet these parents in the lounge, I ask their kid's name and tell them I'll be praying for them. I hope this gives them a glimmer of hope. Some of these babies
are only as big as Ellie and are waiting on heart transplants. Ick!
Even on an emotional morning with not-so-great news, I have to put this
into context and realize that Ellie’s worst days aren’t all that bad.
In other news: I finally
figured out which Sunday school song was Ellie’s. Okay… I know I haven’t written about this
before, but it’s been on my mind since she was born. With our boys, I had a Sunday school song
(from when I was little) that has always been “theirs”. I don’t know why… I just did this, and it
kind of became the lullaby that I would sing to them. I wrote about the songs in their baby books,
and with each boy, that song became so familiar and soothing to them. Okay, back to present… I’ve been trying to
find a song for Ellie for all of her 3 months.
Nothing seemed to really click. I
tried singing “Apple Red Happiness” for a while, but it never seemed to fit
exactly right. Over the weekend, I sat
rocking her and suddenly “He’s Still Working on Me” came to my mind and I sang
it to her. When I got to the first line
of the 2nd verse, I choked up a bit because it was so perfect. I hadn’t sang this song in years… and as the
words started pouring out from whatever archived folder they were stored in, I
knew that THIS was Ellie’s song. She’s
probably heard it about a hundred times since this weekend (What? I have to make up for those months when she
didn’t yet have a song). So for those of
you that don’t have a mind that’s cluttered with a million songs from your
childhood, here is how Ellie’s song goes:
It took Him just a week to make the moon & the stars
The sun & the Earth & Jupiter & Mars
How loving and patient He must be, ‘cause He’s still working on me.
There really ought to be a sign upon my heart,
“Don’t judge me now, there’s an unfinished part”
But I’ll be perfect, just according to His plan
Fashioned by the Master’s loving hands.
He’s still working on me to make me what I ought to be
It took Him just a week to make the moon and the stars
The sun & the Earth & Jupiter & Mars
How loving and patient He must be, ‘cause He’s still working
on me.
Perfect, right? I
thought so. We’ve now moved back to the
regular cardiac floor… no more CICU! So
now I’m back to a room with a desk that I can work from, a bed that’s big
enough for Brandon and I (I mean… it’s the size of a twin mattress… but
relatively, that’s big for a hospital room), we can have our cooler and snacks
in this room… and it’s quiet… plus, we know the staff over here now, and it
helps it feel a little more like home. The
neuro team came in to chat with me and showed me the MRI's pictures of Ellie’s brain…
everything looks pretty normal – nothing alarming there at all. So, that’s good news – nothing crazy going on
upstairs. We need to figure out this
airway deal yet, so that’s the next hurdle.
Until next time… here are some Christmas trees that are decorated in the corridor. The Cardiac team put together the Wizard of Oz one (appropriately featuring the tin man) and... I'm not sure who decorated the Frozen tree... but it's awesome. Even unlit it's awesome, although my picture does it no justice at all.
Cardiology's Christmas tree
Frozen Christmas tree (with ice castle)
No comments:
Post a Comment