As I’ve said a thousand times, when you don’t see me post
for a while, it’s because things are going great with Bug and we’re busy
spending our days being “normalish” and enjoying every morsel of it. And boy, have we been doing that. We’ve been living it up as we’ve been able to
do so many things out and about as a family… knowing that cold and flu season
was looming ahead… knowing that it brought with it the need to hunker down with
the littlest one. Dang it. We’d really hoped that by now, she would be
free of her trach, but we’re not there yet.
Last Monday she had surgery #12.
This is the first time that she didn’t actually have any cutting or
dilating happen while in the OR, so I don’t think this actually counts as a
surgery. It does mean that her new
airway has stabilized quite a bit (big success), although there is some concern
that the front of her trachea is collapsing a bit right above her trach stoma.
That night, we tried a capping procedure at night in the
hospital. Epic fail, I thought. She was able to oxygenate well… which was the
goal, but Ellie was miserable. She cried
and screamed (remember that we’re not used to hearing this, so it was really
heartbreaking) and fought sleep the entire night. I held her in the tiny recliner I was
supposed to sleep in and tried to get her comfortable. I would try desperately to get her to sleep
for 45 minutes to an hour – finally getting her to drift off – and the IV pump
would alarm, or the feed pump, or it was time to take her blood pressure. At 2am, I finally broke and snapped, “We’ve
got to leave her alone” at the nurse. It
wasn’t my finest moment. I was crying… I
was frustrated… I felt like this glorious dream of having Ellie decannulated
was crumbling in front of me. The nurse
reassured me that Ellie was doing well and surprisingly, went on with all that
she had to do through the rest of the night like a ninja in Ellie’s room. I thanked her in the morning and apologized for
being grumpy at 2am. I took my very
exhausted baby home with orders to cap no more than an hour at a time during
sleep for the next four weeks. We’ll see
where that puts us. The 1-hour trials
are still hard to do here… but nothing like the ten hour torture of that first
night.
A very tired Mommy & Buggy after her 1st night time capping trial
Sometimes, Ellie falls asleep capped and does great through
her 1-hour trial, but more often than not, she fights it. She has sleep apnea and needs oxygen while
she sleeps. This means that we have to
put a nasal cannula on her before bed.
Ellie hates this. Thanks to the G
tube and trach, Ellie hasn’t had to have things taped to her face since she was
two month old. She is not about to let
us start doing this again. So I think
part of her frustration is having tubes shoved up her nose and taped to her
face when she’s supposed to be relaxed.
The other stressor: breathing
itself. For so long, breathing has been
effortless for Ellie. Either her
ventilator was doing it for her, or she was breathing through the trach with
absolutely no resistance. Now, she has
to figure out how to breathe through her nose when she sleeps and that’s a
whole new thing to learn. Something so
simple and something we all take for granted… she has to learn. And it’s hard work. So that’s part of her frustration, too. This road to decannulation is harder than I
imagined – here’s hoping that it starts to get smoother.
She’s still so full of joy.
She’s a smart little cookie and has personality to spare. She wants to be involved in everything that
goes on every single day… and we couldn’t be more excited about all of
this. She is making incredible progress
in therapy and has even started saying mama, dada and bub,bub (for the
boys). She’s learning how to climb our
steps (and sometimes how to fall back down a few) and is standing all the time
now. She’s amazing.
She's working hard on self-feeding.
And we were keeping the cannula on her all day to see if it helped with her comfort level
One trick that she’s picked back up that we’re not so
impressed with, though: storming.
Ugh. I can’t even begin to tell
you how this makes me feel. The first
episode occurred on Monday, October 10th, the day of my grandma’s
funeral. We’d spent the day with our
family celebrating the life of my grandma and enjoying the company of family
from all over. But you know how those
kinds of days can be physically and emotionally exhausting, right? This was absolutely no exception. By the end of the day, Brandon had headed to
work and I snuggled in with all of the kiddos in my room. We did not have a nurse that night. Ellie seemed restless and Lance offered to
snuggle with her. When her pulse ox
alarm started to go off, I thought her probe was bad and silenced it for a bit,
while I climbed out of bed to cuddle her.
She nuzzled into me, but couldn’t stop moving. Her pulse ox machine never reads well when
she moves around so much, so I waited a bit to turn it back on. After some more cuddles, she started to sweat
and I decided to bring her upstairs to her room, place her in the crib and see
how she’d do there. When I kicked the
oximeter on this time, her heart rate was over 170, her oxygen levels were
fighting to stay above 90 and when I took her temp, she had skyrocketed from “feeling
warm” an hour before to a temp of 104. I
called Brandon at work and gave her Tylenol for the fever. He headed home quick during his lunch break
and took her vitals again. Her fever was
starting to come down… slowly. By this
time, the Tylenol was able to calm her enough to let her sleep. Her respiratory rate was still high, but
starting to decline… HR and temp followed suit.
Her oxygen level raised to a normal level as well. Storming.
Only this time, Tylenol seemed to make a difference for her.
We weren’t 100% sure this was what was happening because she
hadn’t stormed for about a year and that was under extreme stress in the
hospital. We had a great (read: normal)
day with no issues. She wasn’t sick, she
wasn’t in pain. There wasn’t an
explanation.
Earlier this week, she showed some of the same behaviors for
our night nurse. Ick. Last Friday, we’d had another fun family
night at the barn enjoying a fish fry and lots of activity. All three kiddos fell asleep on the way home
(Ellie fell asleep in the driveway with her cap on her trach). Our night nurse, Danelle, came on shift 15
minutes later and took the peacefully sleeping Bug out of my arms and let her
finish her 1-hour capping trial without issue.
I went to bed, looking forward to enjoying a night of sleep having my
big bed all to myself.
At about 12:20am, Danelle knocked on my door. She said, “Jackie, I need you up here”. I thought it was already morning, and
stumbled out of bed to go upstairs. Once
upstairs, I could see that things weren’t right at all. Ellie’s color was awful… pale, almost
yellow. Danelle started firing things at
me that my sleepy brain wasn’t ready for.
I watched as Ellie drew her knees and elbows up and shook (seizures?), I
saw that her heart rate was peeking around 160 and her oxygen was struggling to
stay in the high 80s. She was on 3L of
oxygen at the time. Yikes! Her capillary refill was awful. When we pressed on her fingers and toes, they’d
stay white for a very long time. Her
respiratory rate was increasing. If this
was storming… it was coming on fast and furious and it was looking scarier than
what we’d seen when she was little. I
was scared. For the first time in a
while… this little girl really had me scared.
I called Brandon. Then I called
mom and she said she’d be right over to stay with the boys. We took a core temp on Ellie (98.4) and
packed up the van to head to Dayton. We
called ahead to the ER to let them know the situation and when we arrived, were
taken into the Special Care room. Now,
we’ve had our share of ER trips with Ellie and the boys. We’ve been taken back to regular rooms and we’d
sit there and wait for registration… then for another person… then for someone
else… the ER was a long waiting game.
Not this time.
This time, they walked us back to a room behind the charge nurse
desk, through a set of double doors, and into this one room… separated from all
other rooms… it had an elevator right outside of it and big double doors into
it. It was set up like a trauma room and I’ve never
been in a trauma room. I walked in and
my heart dropped. I set Ellie down on
that big bed and took a step back. I
looked behind me as ten (seriously – TEN) people flooded that room and
surrounded my little girl. Thank
goodness Danelle was there because I couldn’t speak much at all. I was able to answer a few questions, but she
was there with her chart and was able to answer specific questions about medications
and doses and such. I was
overwhelmed. They took a core temp again
– 104.7! Her temperature had risen from
98.4 to 104.7 in less than an hour and half.
This storm was severe. After an
hour and a half or so, Ellie calmed down.
They’d given her a Tylenol suppository and that had settled her down
some. We’d wait in the special care room
until daybreak when a room was available upstairs for her. She had awful trach secretions and they
wanted to monitor her for those, so they took us up to PICU for
observation. The rest of our admission
was based on those secretions. Nothing
more was said about storming from the medical team – even though I’d pushed
with my questions. I’m not sure they
believed me at all… even when I explained her history and how quickly things
changed that night. This isn’t new
territory for us… this is a child who storms who shouldn’t storm and that makes
me sound like a crazy person, I guess.
Getting and EKG in the ER after she'd settled down
The next day - back to her silly self
So now onto the next step… the part that makes my insides
turn and twist… the part that makes me want to throw a fit like a petulant child: we need to know why. We need to find what we cannot see, essentially. We need to figure out what has changed
recently to make these storms reemerge in our “healthy-ish” girl. In the past, these were primarily cardiac
related… we think. To be honest, her
storming has always been idiopathic (or there wasn’t really an
explanation). But once her heart was
repaired in Boston… they went away. We’re
researching diligently now… and making appointments with specialists to make
sure we’re covering our bases. Sooo…
that’s where we’re at. I feel like these
stupid storms took the wind out of my sails, yes… but the silver lining here is
that they’re only a small part of our life with Ellie. She spends her days happy and full of
life. She signs songs to us and loves on
us like you wouldn’t believe. This is
just another hurdle… but one we wanted to be done with long ago. Damn you, thunder! We are not friends... and you will not win this battle.
