About 2:10am Sunday morning I woke up & heard Eli grunting with his breathing.
After looking at the monitor, his heart rate was up to 130s-140s. I
called the nurse for some pain medicine, which was given shortly after.
His breathing was still labored, but not grunting after the morphine
had time to take effect. For the next two hours his heart rate
fluctuated between 120 (his paced setting) up to low 160s. It was
strange because it varied so much. He had been on .25L of oxygen but
was now requiring .5L just to stay above 92%. Eli was awake and
tolerating it, but it was just strange because he hadn't had any
issues like that before. Dr. Abraham was notified about an hour into the episode and said to call back if it got worse or wasn't any better
within an hour. When that time was up, Eli was doing better. The heart
rate was still fluctuating, but it was continually between 120s-140s
and trending downward.
As the morning progressed, he
just wasn't himself. We kept trying to work on his pain control because
we believed increased pain was causing the higher heart rate and
labored/grunting breathing. We also thought maybe he needed to poop so a
suppository was administered after 4pm to help that process along.
Around
that time his nurse noted a his temperature was up to 101.2. That
could also explain the rise & fluctuations in heart rate. He was
already getting Tylenol every six hours for pain. Another pain med he was getting almost every six hours was Toradol, which is like
Ibuprofen so it also had fever-reducing capabilities. We weren't sure
what else to do for the fever right then. The nurse went out to look
over his chart (and if she's like me, to ask the other nurses for input
before calling the doctor!)
About 4:50 pm, Eli was
really fussy, so I stayed beside his bed holding his hand and talking
about the movie he was watching. His heart rate was still fluctuating,
but suddenly the monitor showed 180 then 225. It stayed in the
210s-220s for the next several "flashes." I just kept talking to Eli
while I checked his monitor stickers, hoping one was off (even though I
knew if one was off it wouldn't display those numbers). While I was
doing that, three nurses came into the room including ours who was on
the phone trying to page the cardiologist (Dr. Abarbanell who had seen
him every day since Friday and was the doctor doing echos during his
surgery Wednesday...she was pretty up to date with him!).
Eli
had a prolonged run of super ventricular tachycardia (SVT). When I
looked up a definition of SVT so I could explain it better, one of the
words used to describe it was "ominous" which was very appropriate.
Eli's heart rate was staying around 200 beats per minute (remember, one
week ago his resting heart rate was around 70!). He was awake and upset
but not crying. His blood pressure was stable but his oxygen level was
dropping. He went from requiring .5L to a 2.5 liters just to stay
around 90%.
Dr. Abarbanell was on her way, so a
hospitalist and a resident came to check him out and see if any
intervention needed to take place before she arrived. The crash cart
was outside his door and the nurses were drawing labs from his central
line (thank God that was still there!). I had already cleared the bed
of all our personal stuff except for Eli's pacifier and his stuffed
Pablo (character from The Backyardigans, who actually went into surgery
with Eli on Wednesday). A 12-lead EKG was obtained to try and identify
the rhythm better because it didn't look like "classic SVT" on the room
monitor.
In the middle of all this, Dr. Amy (our family doctor)
arrived. She had told me before surgery she was going to be in Indy
this Sunday and wanted to visit Eli. It's just miraculous timing that
she was there with us during some of those scary moments. It definitely
helped calm us (a little).
Dr. Abarbanell got
here, examined him and decided to give a dose of Adenosine in hopes of
breaking the rhythm. This is a drug found on the crash cart. While
they prepared to give him the medicine I got on Facebook and sent out an
urgent prayer request. I didn't want to scare anyone and I didn't know
for sure what was happening, but we needed those prayers! While the
nurse prepared the Adenosine, a respiratory therapist got the EKG
machine hooked up again to more closely monitor his heart rhythm as they
gave him the drug. Three more nurses came in and stood ready to help
if something unexpected happened. They wound up giving two doses of
Adenosine and nothing happened. His rhythm slowed slightly while the
drug was going in, but it rose back to the 200 level. At that point,
Dr. Abarbanell said she didn't know what rhythm it was and wondered if
it was a pacemaker issue since the medicine didn't really do anything
for him. Someone was already on the phone with Dr. Steinberg, the
pacemaker guru of the group (don't tell him I wrote that). He was on
his way to work on the settings.
While we waited for
Dr. Steinberg's arrival, Dr. Abarbanell started an echo to confirm no
fluid around the heart or lungs which would be causing Eli's distress.
The only thing she saw was a small pleural effusion (pocket of fluid) at
his right lung which we already knew about from chest xray earlier in
the day. With the echo, she did pick up on a rhythm but wasn't sure if
it was right or not. She saved the screen to show Dr. Steinberg. When
Dr. Steinberg arrived he had the most serious look on his face that I've
ever seen. He had a machine that he could use to read and manipulate
Eli's pacemaker.
He asked a few questions while he
worked but basically studied readouts and pushed buttons. He and Dr.
Abarbanell discussed things and we listened, but couldn't comprehend
much of it. Eli was still awake, good blood pressure, and pooping
through this (his laxative worked...what timing!) After several
minutes, Dr. Steinberg said to call ICU & get a bed ready for Eli.
Dr. Abarbanell went out to do that while he came around the bed to talk
to us.
He told us Eli's heart was in a very fast
rhythm that wasn't responding to drugs or pacemaker manipulation. Our
next option was to go to ICU, sedate him, and cardiovert his heart
rhythm. Cardiovert means to shock the heart. They were going to have
to shock his heart to break the "cycle" it was in because even though
Eli was tolerating it pretty well, he wasn't likely to for much longer.
As he was starting to tell us why he thought Eli was in the rhythm to
begin with, he noticed a change on the monitor. Eli's heart rate had
dropped from 200s to 180s. Over the next minute or so, his rate
dropped down to the 90s (I think, I was actually lightheaded at this
point).
Eli converted on his own. That's not exactly true, he had help, but he wasn't shocked to cardiovert.
Dr.
Steinberg did some more readouts and set Eli's pacemaker at 130. After
waiting nearly 30 minutes to see if he'd stay in that rhythm, the
doctors started to pack up and get ready to leave. They spent a fair
amount of time talking to us about why they think it happened and what
happened.
Eli's heart is not normal. Most of you
reading this have two atria (upper chambers) and two ventricles (lower
chambers). Eli has one of each. After all these surgeries, his atria
have been combined into one atrium. To do his Fontan and mitral valve
repair, Dr. Abraham had to make several incisions in Eli's atrium.
These are irritating to the surrounding heart muscle and tissues.
Despite how well Eli had been doing on his other post op days, his heart
was irritated and it was more than we knew. We found out. All three
doctors (Dr. Abarbanell, Dr. Steinberg, and Dr. Abraham via telephone)
said they didn't really expect Eli to do this, but it wasn't surprising
to them considering the number of incisions that had to be made during
surgery.
Here's the rundown of what Dr. Steinberg figured out from the pacemaker monitoring and Dr. Abarbanell from the echo:
-
Eli's heart went into a rhythm called Atrial Flutter. It's where the
atria aren't contracting, they're quivering which results in a
nonfunctional beat. His atria were quivering at a rate of 400 beats per
minute. That electrical impulse was conducting to his ventricles in a
2:1 ratio, meaning for every two atrial beats, there was one ventricular
beat. That's why we saw the rate of 200 on his monitor.
- Dr.
Steinberg drove the pacemaker to beat even faster. His goal was that it
would "confuse" the electrical activity of Eli's heart and break out of
atrial flutter. It worked and he went into atrial fibrillation.
That's also not a desirable rhythm, but it's often easier for someone to
break out of. At the very least, the rate may be slower.
-
Cardiovert means to shock the heart. The purpose is to stop the rhythm
it's in and hope when it restarts, it is in a new rhythm...preferably
normal sinus rhythm. Eli did not have to be cardioverted, he converted
on his own.
The doctors obviously couldn't guarantee
it wouldn't happen again, but they didn't think it would. They were
confident enough to leave him on the general peds floor with monitoring
throughout the night, with orders to move to ICU if it did happen
again. In comparison with the events of yesterday afternoon/evening,
Eli's overnight was uneventful. Both doctors agreed that as his heart
healed from surgery, the risk of recurrence was less and less.
How
is Eli? Considering all that happened, he was doing great. After the
excitement settled down he was actually talking to us. I got off the
phone with my sister and Eli said, "I-ya!" which is what he calls our
Ashleys. I asked if he wanted to talk to her and he said yes, so I
called her back! He told her hi and when she asked what he was watching
he said Scrat (from Ice Age). He slept well for a long time and we
were better at staying on top of his pain.
It shouldn't
be a surprise that he slept well. He started with the rate of 200+
around 4:50pm. He converted around 7:30pm. That means that for over 2
1/2 hours, his heart was beating at over 200 per minute. If you want to
compare that to something, he basically ran a marathon from his bed
with a his half a functional heart that was operated on only four days
ago. I challenge you to show us someone tougher than our kid right now.
Thank
you for the prayers. When I finally got a chance to get back on
Facebook last night to update our request for prayers, I was in
disbelief at how many people liked, commented and shared our status.
Eli's MVPs Facebook page gained about 20 new members last night and I
can't even imagine how many prayers were generated by all of you. Thank
you, thank you, thank you! Even though we couldn't update throughout
the ordeal, we knew just letting people know we needed prayers was going
to help. It certainly did help us to know that even though you weren't
present, we weren't alone. And for part of it we weren't alone because
Dr. Amy was with us. What a blessing!
We think the
doctors, nurses, aides, and respiratory therapists did a great job.
Everyone was calm and did a great job of masking the scary adrenaline
rush I know is felt in situations like that! Efforts were made all
along to make sure we understood what was happening as best as they
knew, what they were doing, why they were doing it, and they checked in
with us to make sure we were as okay as the situation allowed. Bryan and I were able to get some sleep, but even though El slept well for the first part of the night, the early morning hours weren't great. Monday's events will be covered in a later blog post.
Again, thanks for reading and for all the support!
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