Ellie was calm when we came in and responded to the oral
sedation (pushed through her NG tube) within a few minutes. The tech started the echo and Ellie’s oxygen
saturation dropped. The nurse said, “I’ll
start some oxygen”. I said… “No, she can’t
be on oxygen”. Ugh – not this battle
again. The anesthesiologist came in and
explained to me over and over again that it’d be fine and that it was
necessary. I was still hesitant. They ended up just doing some blow-by oxygen,
which I was a little more comfortable with.
The echo tech was not as talkative as Teresa (the one in Dayton we know
well)… so we didn’t get much out of the experience, really. Once finished, they gave us the okay to wake
Ellie up. Well, that little stinker didn’t
want to wake up for anything… which wasn’t much fun. Mom and I tried to stimulate her to wake her
up but she was having none of it.
Fortunately, they weren’t too busy, so we were able to hang out for a
while. Ellie’s pulse ox continued to
fluctuate – at one point it read as low as 35%.
They kept going for the oxygen and I questioned it each time. Eventually, they told us that they’d be
admitting us. When they got ready to
transport us, they started fitting Ellie for a nasal cannula. I said, “No, I’m not okay with that”. Again, they reassured me that this was
necessary and that they wouldn’t transport her without it. I told Mom that I was about to make the nurse
and anesthesiologist mad, but I was calling Dr. Luby. When I called her office, she was not
available, so I left the desk a message that I needed her to call me ASAP. She called back right away and we joked about
how difficult Ellie is. She said that
since this was strictly respiratory and not a cardiac event, she was okay with
a little blow by oxygen. She was very
clear that she’d be upset if Ellie was given 100% oxygen through a cannula. The anesthesiologist was in the room while I
was on the phone. I know I made her mad
by questioning her process so much, and for that, I’m sorry. I’m just trying to do what I think is best
for Ellie.
The cardiologist at Cincinnati (Dr. Andersen) came in and
talked with the anesthesiologist to get the scoop. She mentioned to him that I was refusing
oxygen. He said he’d talk with Dr. Luby…
which was good news to me. We were
transported up to the 6th floor (the heart institute) for
observation. They kept Ellie on blow by
oxygen, but each time they’d remove it, her saturation would drop again. They explained that sometimes sedation can do
this – and it didn’t work in Ellie’s favor that she has Down syndrome and
already struggles with weak muscles and airway obstruction. When the nurse came in and gave me a tutorial
on how to break down the couch to a bed, it was obvious that we weren’t going
anywhere on Wednesday. I called B and
asked him to come down and bring a few things so we could stay until the
morning. Mom headed out. Ellie got a chest x-ray and we were told that
she had fluid on her lungs and was switched from oral Lasix to IV Lasix to help
shed that pulmonary edema.
During Thursday morning rounds, we were able to stand in the
circle with the cardiologist, cardio fellows, nurses, etc. They talked about how Ellie’s AV Canal defect
was not balanced (originally, it was balanced, but has progressively changed to
where the left side is larger than it should be). They also talked about her “generously sized”
heart. I asked to see the x-ray they’d
taken Wednesday night. Her heart is
HUGE! I don’t know that I’ve ever seen
an infant’s chest x-ray, but I was surprised to see that Ellie’s heart
literally took up half of her rib cage.
The apex of her heart was almost in line with the bottom of her
ribs. I know this is because her heart
has to work extra hard. The cardiologist
also explained to us how they could tell that she had fluid on her lungs. Interesting.
He also talked about how this could partially be because of the
administration of oxygen (grrrr… this is why I was so adamant in the echo
lab). They discussed how Ellie’s low
oxygen saturation could be due to an airway obstruction and talked about having
a pulmonologist check her out today and possibly do a sleep study on her. She could possibly have sleep apnea.
Shortly after rounds, though, Ellie started one of her
fits. We didn’t get too excited about
this because she’d had these almost daily for about 6 weeks now. The cardiology
team wasn’t so calm. They were in here
constantly asking questions about these episodes and watching as her heart rate
and respiratory rate went through the roof.
She was taking over 70 breaths per minute and her heart rate was
consistently over 200 (maxing out at 210).
She did this for several hours.
They were honest in saying, “We’ve never seen this before, really”, and
asked to video her episode so that they could use it for training and to show
the other staff members. We agreed, of
course. Ellie had some ventricular
tachycardia going on from time to time as well.
Dang it. It started with lip
smacking (and she’d just taken a full feed) and progressed to fussiness,
restlessness, her usual backbend, head arched back to the left position with
arms and legs constantly flailing. One
of the cardiac fellows suggested that this could be seizure activity. What??
We told him that this was something Ellie did daily and that it was
always accompanied by profuse sweating and she was able to elevate her body
temperature considerably during fits.
This is the first time she’s had a fit in a clinical setting, though,
since she started to spike her temp during them. After 4 hours, Ellie calmed down. An hour and a half later, though, she started
another fit. I’d never seen more that
one of these in a day, so I was alarmed.
We put her on our cold floor at home and it’s the ONLY thing that
soothes her. They brought in ice packs
and made Ellie a chilly water bed to lie on.
This was working. The neurologist
was brought in to evaluate Ellie.
The neurologist again went through the routine with us and
asked us questions about these fits.
After evaluating Ellie for a while, she said that she had two
predictions for us, and they’d start testing for both. Her first prediction is that Ellie is having
seizures (for whatever reason). She said
the lip smacking, body position and arm and leg movements were consistent with
seizures and would cause her breathing and respiratory rates to increase, her
blood pressure to increase, and the sweating and elevated body temp made
sense. She wanted Ellie to have an EEG
through the night to see if they could capture another fit. The other option that might make sense is
called autonomic storming. I’d never
heard of anything like this. I knew the
autonomic nervous system controlled things that we don’t think about (blood
pressure, heart rate, breathing, etc.).
Autonomic storming is where the body throws these out of balance. This normally happens after a traumatic brain
injury or damage to the spinal cord of hypothalamus gland. That part of the description doesn’t apply,
but the description of what happens during these “storms” is spot on for what
Ellie does. For now, she’s plugged into
a million electrodes (okay, like 27… but still) and will have an EEG through
the night. Tomorrow morning, they’re
going to try to get her in for an MRI.
The EEG will be able to tell us if she’s having seizures (if she has a
fit while it’s going) and the MRI will show if there is something going on that
may be causing autonomic storming. These
two things are very scary to me… but I finally feel like we’re trying to find
an answer that makes sense for these fits she’s been having. It’s scary that she has a normal body
temperature when she goes to bed, a normal body temp as she starts her fits,
but is able to drive her temp up (even with Tylenol) during the fits… sometimes
as high as 105 F. So answers would be
great if we can find them.
Leads on her head to start the EEG.
Am I terrified that she has to be sedated again for the
MRI?? You bet. But you know… we just take it all in and do
whatever we think is the best thing to do for our sweet Ellie. On the plus side, it looks like we’ll have an
earlier surgery consult with Dr. Morales.
They’ve talked about possibly moving her surgery date up some. We’ll find out more tomorrow.
Brandon and I had our Thanksgiving dinner along with
hundreds of other families in the comforts of Cincinnati Children’s. Our boys were able to have Thanksgiving
dinner with my family, which I’m sure they enjoyed. Happy Thanksgiving y'all... thanks so much for your thoughts and prayers :). We love you!
The Schroer grand kids (minus) Ellie setting up Christmas decorations after Thanksgiving dinner.
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