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| Caelin a few hours after given the extreme overdoes of Clonidine. |
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| This is close to how he looked for over 24 hours... at points it was worse than this. |
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| Just got his EEG hooked up and appears awake but is not responsive to our voices. |
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| Caelin starting to wake up in the late afternoon and playing with a toy. 6.12.12 |
Yesterday morning, Monday, June 11, 2012, started off as a
typical monday morning. The usual visitors came in to do their weekly
assessments and check in on Cael. Cael got an echocardiogram done around 10:30
AM. He tolerated it very well and gave the echo tech excellent pictures. He
kept complimenting Cael on being a good boy and thanking him for allowing him
to get all the shots he needed. The echo was over around 11:00AM, he got his
scheduled Valium and Morphine and he passed out (or was knocked out for that
matter). A little while later the COWs (Computers on Wheels), doctors, and
specialists arrived. In came the herd to evaluate Cael’s physical appearance
and get the scoop from the weekend. This is when Mom revealed her built up
frustrations to them. To make a long story short, she was upset about Caelin’s
purple spells and the lack of a plan in place to get Caelin off the ventilator.
Mommy and Daddy see how the ventilator agitates Cael and how frequently this
agitation causes his heart rate to drop (it has hit 64 bpm) and blood pressures
to go up (they have gone into the high 140s systolic). Sometimes when he is in
bed he will cough or move his head ever so slightly and it causes his heart
rate to drop below 100bpm (Caelin has been normally between 120 and 150). The
doctors are concerned he is not ready because he has proven to be full of
surprises. Mommy and Daddy respect their clinical expertise but just want them
to justify their reasons and hear our concerns. We are not doctors but we try
to learn as much as we can because we believe it is of the utmost importance to
be well-educated on our son and his condition. With that said, one of us is
almost always at the hospital with Cael so we know what is normal for him and
what is not. It is not normal for our son to be inconsolable and only relax
with sedation. So we would like for them to hear our concerns, for them to be
proactive in discovering why he is doing this, formulate a plan to break this
vicious cycle, and explain that plan. We may be needy in their eyes, but our
son is more important to us than anything and we are his voice. So needless to
say, the conversation turned a bit argumentative and Mommy was brought to tears
(the emotion of the past three heart-wrenching and unpredictable weeks had taken
control). So Dr. Wilmot and Diane (nurse practitioner) stayed in Caelin’s room
to help calm Mommy and get more details on Cael’s purple spells, as the rest of
the team ventured forward to the next patient. With his heart looking somewhat
large on the chest X-ray this morning, they did
not think he would be able to be extubated within the next 24-48 hours so
ultimately, the doctors decided to wait until the echocardiogram was read
before planning to make any big changes.
Between 1 and 2 Dr. Stapleton (cardiologist) came in to
discuss Caelin’s echocardiogram. He sat down in the chair next to Mommy and
Daddy and said he reviewed the echo. He then looked puzzled and said he had a
couple other people analyze the echo and compare it to previous echos to make sure
he was reading and diagnosing it correctly. As the suspense was building, he
used the “n” word… normal. Caelin’s function looked like it was back to normal
(normal of his hypoplastic left heart, of course). This was not the news we
were expecting at all. With this news we were surprised and jubilated! Glimmers
of hope flashed before our eyes as we started thinking about what this could
mean over the next couple of months… progress toward going home before he needs
his Glen. Something that from the echo four days prior seemed out of reach, out
of sight. After this news, Dr. Stapleton and Dr. Wilmot agreed that extubation was
now a good possibility within the next 24-48 hours- amazing! When they left our
room, grins could not escape our faces. In the mean time, Dr. Stock, the head
doctor of the CVICU, came in to apologize for the discussion we had earlier and
bringing me to tears. Mommy appreciated the apology but at the same time told
her the emotions from the last three weeks have caught up to me and have been
the hardest of my life… honestly, the last twelve weeks for that matter. Mommy
reiterated her feelings of respect and trust toward Dr. Stock because she is
brilliant, meticulous, and proactive. Mommy also explained that we know
Caelin’s normal really well and all we want is what is best for him and would
like to have a plan to get him safely to where he needs to be. So
she left and we stood by Caelin’s bedside telling him we are so proud of him
and blessed to have him as our son. A little later Mommy had to leave to do
some running around and Daddy stayed with Cael.
Around 4:00 PM Sean got up to check Caelin’s diaper because
his Lasix infusion had finished a few minutes prior. When he walked over to
Cael’s bed he saw a pale, limp, child with his eyes wide open, unable to close.
He expressed concern to the nurse and after talking they realized it could be
caused by his new medication, Clonidine. Prior to giving it, the nurse was
concerned with the dose being delivered in a 20mL mixture and called the pharmacy
to make sure it was an appropriate dose to give Caelin, a 4 kilogram kid. The
pharmacist assured Lolly, Cael’s nurse, that the dose must be mixed in that
volume and it should be fine for Cael. Although still hesitant, Lolly pushed
all 20mL through Caelin’s J Tube in roughly 20 minutes. This is crazy because
this volume is like a bolus feed and Cael has been only getting 6mL in an hour.
That’s 60 minutes. The nurse went to get Dr. Stock. Meanwhile, Dr.
Stapleton was walking past Caelin’s room so Daddy asked him to come in and
assess Cael. Other than his physical appearance, Caelin’s heart rate was in the
low 100s and his pressures had changed, too. Initially, Dr. Stapleton said he
was not concerned with the changes because the Clonidine Cael got around 3:40
PM has a calming effect. Then Cael’s heart rate dropped into the 70s and 60s.
With this, the “Staff Assist” button was pressed before matters became worse.
The doctors worked to give Caelin a full dose of Atripine and a half does of
Narcan to help his heart and stop the effectiveness of the Clonidine. They
realized he was given 2 milligrams (mg) of this medication instead of 2
micrograms (mcg). 1 mg = 1000 mcg, therefore, he received 1, 998 mcg more than
what he was supposed to.
Meanwhile, Daddy called Mommy to inform her of the recent
event and she lost it. She finished letting out the dogs, picked up her
glasses, and headed back to the hospital as fast as she could. It is a good
thing Dad was there and noticed Caelin was not himself, because this event had
the potential to be worse than it is.
Dr. Wilmot came back into Caelin’s room at 7:16 PM to check
on Cael’s heart, pressures, and overall appearance. He said his pressures are
still high but not as high when he (Dr. Wilmot) first arrived and Caelin was
wide awake and pissed. Dr. Wilmot had a half hour discussion with us about the
possible effects of Clonidine but assured us they should not be long lasting
(past Tuesday was his projection). He also went over what measures are being
done to investigate all the facts of the overdose and what changes to the
system are being made to prevent something like this from happening again. As
it is our understanding, Dr. Wilmot was not directly involved in the chain of
events of the overdose but he took it upon himself to investigate the steps of
this event and get us answers. Although Dr. Wilmot is the head of transplant
and it partially scares us that he follows Caelin so closely, we are also very
thankful for his consistent focus on detail, compassion, and determination to
do what is best for Caelin.
Over night, Caelin was mostly knocked out with a few
instances of him waking up angry, dropping his heart rate and desaturating,
then passing back out. He has been turning purple almost instantly, then going
right back to pale when he passed out; there was really no in-between.
He also spiked a fever of 38.5 degrees Celsius which is
101.3 degrees Fahrenheit. This is not a high fever for a normal child, but it
can be alarmingly high for someone of Cael’s condition. Although we thought it
could be related to his purple agitation spells and the overdose, the doctor
wanted to be safe and run cultures on all of his lines, the breathing tube, and
check for a UTI. All of these cultures show no growth as of this morning but
still have a couple of days to change.
This morning Caelin’s work of breathing had increased and
his heart rate was still low. Because of this, they gave him more support on
the ventilator to take work away from Cael.
He had several purple agitation spells throughout the day
mostly caused by him waking up mad. He was a little easier to console today
than he had been the past couple of days but we think part of that might be the
medication.
Mommy and Daddy were very concerned in the early afternoon
when Caelin was still not responding well to touch or sound. Also, his eyes
kept rolling into the back of his head over to the right sight and when they
were a bit forward he appeared unable to focus. With this concern, the doctors
ordered a head ultrasound and an EEG to follow Cael’s brain activity. The head
ultrasound looked normal according to Dr. Stock and as far as we know, the EEG
has yet to be analyzed. We hope to have more information about the EEG in the
morning; however, in the late afternoon/early evening, Cael woke up. He became
alert and awake, responded to touch, sound, and sight. We felt a great sense of
relief as we saw Caelin return to being Caelin. He actually has been awake and
alert since 6:30 PM… it is now 11:59 PM and he is still fighting sleep. Perhaps
he feels he has slept enough the past 36 hours.
Caelin had an echocardiogram done this morning. While the
technician was doing the echo, Dr. Wilmot was in the room. After he watched the
tech and directed her on what he wanted to see, he informed Mommy that the
function appeared somewhat different from yesterday. He said the tricuspid
valve leak could have been classified as trivial yesterday but mild today. And
he rated his heart function a 46 where as yesterday it was a 52. Clearly this
made Mommy upset and frustrated. But later in the evening, Dr. Stapleton came
by to say he analyzed the echo more closely and compared it to yesterdays and
he does not see a difference between the two. He said the reason why it
initially looked worse is because his heart was beating slower today than
yesterday. Today it was around 107-115 bpm while yesterday morning before the
overdose it was more between 135 and 150 bpm. Hopefully they will do another
echo in a couple days and his function will be “normal” and getting stronger.
Another thing that happened as a result of this event is his
J Tube clogging. Nothing can be pushed into it which poses a problem for
feeding. They tried using soda for the carbonation to clear it. That failed.
They then used sodium bicarbonate and creon to try to break down the contents
in the J tube. That failed. So now it is looking like they will have to do an
endoscopy to pull out the old J tube and put in a new one so Cael can get fed.
Seriously, nearly nothing comes easy for our son. He truly will have the best
college essay on “How I Overcame Adversity.”
Thank you for all your prayers in this time of need. Sorry
for posting so late, this post has been a work in progress. Clearly the past
few days have been highly eventful and exhausting. Quite honestly, this post
has not been reviewed so there may be ample spelling/grammar/technical errors
so please bare with us.
By the way, Caelin's blog has now past 10,000 views! So thank you all for supporting and following Caelin's story!
