Wednesday March 13th, 2019. We travelled to SickKids for
E’s scheduled 3-month lumbar puncture. This marked the end of
Maintenance Cycle 4, and the beginning of Cycle 5. My mom had come
down and stayed over. That meant we could leave early, and she could
get help by getting J to March Break daycamp. The traffic into the
downtown core was a bit lighter with many people off, or away for
break, so the door-to-door trip only took us an hour. Much better
than the usual 1.5 – 2 hour ones.
In hindsight, this
story actually begins 4 weeks ago. We were at our satellite clinic
for E’s monthly vincristine push & bloodwork. There was a
problem with his port: our RN could flush saline into the port, but
there was absolutely no blood return. He was able to get his
vincristine push that day, but they had to do a finger poke to
collect blood because they couldn’t get any out of the port.
Fast forward to 2
weeks ago. We were again at our satellite clinic, and our nurse
practitioner & RN had asked us to bring E in with an EMLA patch.
Instead of the usual finger poke when we go in just for bloodwork,
they were going to try to access his port again to see if they could
get blood return. It worked! Everything was good, or seemed to be....
Fast forward again to this week. At
SickKids, E had his port accessed, but they couldn’t
get any blood return, despite numerous saline flushes. We were told
that this isn’t a problem, and this sometimes happens in
maintenance. There can be a sheath blood clot around the end part of
the tube that goes into E’s jugular vein. This sheath will open to
allow saline, or chemo to be pushed, but it will draw up, and cover
the end of the tube when they attempt to draw blood. It’s fairly
common, especially in Maintenance when the port is not accessed as
often. There’s a fairly easy solution though: they inject a drug
called TPA, and let it sit for a while. TPA will dissolve the clot,
allowing the port to function properly again. The only problem is
that we were told that they would have to flush E’s port with TPA,
and we’d have to wait 2 hours before checking to see if the clot
had dissolved. If you check earlier, and it’s not dissolved, you
have to start from the beginning again. So, we had an extra 2 hours
added on to our day, waiting for E’s clot to dissolve.
The previous night,
we had fed E solids a bit later than normal, because he needs to go
under general anaesthesia for the lumbar puncture procedure. Patients
can have solids up until midnight, milk, or juice up until 4am, and
clear liquids until 8am. We fed E around 7:30pm, and I set an alarm
to wake up to give him a bottle of milk at 3:30am. He didn’t just
sleep-drink the bottle, he woke up. That had me awake, and also woke
up my wife. Around 4:30am, I still wasn’t back to sleep, and J woke
up, and was calling for me. I went to snuggle with him in his bed,
but never went back to sleep. It was a fairly busy waiting room in
8D, and there were a few more kids than normal. Combined with a
slightly busier than normal day, and the extra 2 hours we had to
wait, E didn’t get his turn in Cujo’s Room for his procedure
until 12:15pm. By this time he was so hungry, and I felt so badly for
him. We brought a cooler with milk, and food for him to eat when he
woke up from his procedure, and he was well aware that we had it, and
he knew there was food inside. The poor little guy kept asking “eat,
eat, eat”, or dragging the cooler out from underneath the stroller,
and saying “open, open”. It broke my heart to see asking for
food. We can’t explain why he can’t eat. He’s hungry, he wants
food, he’s asking for food, we’re saying no, and he’s
rightfully getting upset. Poor guy, he doesn’t understand.
His procedure seemed
to take a bit longer than normal, and we found out that the
anaesthetic didn’t work on him so well. They gave him his dose,
whatever it was, and he was out, but not completely out. He was still
moving, and twitching, so they had to give him more. They told us
they gave him 120mL, which is a fair bit for someone with a mass of
~15kg. It still wasn’t working, so they had to add in an adjunct
anaesthetic to completely put him under. They tell us that sometimes
patients will build up a bit of a tolerance to anaesthesia if they
are put under a lot. This is probably his 15th or 16th
time under general anaesthetics in less than 2 years, so that’s
fairly frequent. I wonder though, how much of his mood might have had
an effect on it? He was hungry and agitated, so perhaps that had an
effect, and caused his body to have a greater tolerance?
The biggest
fireworks of the day were save for the recovery room. Right around
12:30pm, the door to Cujo’s Room opened, and they wheeled him out
on a stretcher. We got a smile and a thumbs-up from the staff inside,
which is their usual signal for things went well, and everything is
fine. We followed the team wheeling him into slot B in the recovery
room, where they analyze and monitor his vitals. We started getting
the sense that something was wrong. One of the team members said
something about “he had colour in his face before the procedure”,
then they promptly gave him a mask with oxygen. At the same time,
another nurse was hooking up a pulse/blood oxygen sensor on his toe.
We saw his pulse on the monitor, and then we saw the pulse go flat.
My wife and I looked at each-other for what seemed like minutes. I
don’t remember whether I thought it in my head, or whether I asked
her aloud, but “what is going on?” was first and forefront in my
thoughts. My wife managed to croak “is everything okay, is he
alright?”, and the nurses told us that all was fine. I started to
feel a panic attack coming on, and I looked around the room for a
chair that I would be able to use to sit down. I could feel the blood
draining from my head, and my vision started to fade a little. I
spoke to myself in my head. I reassured myself that the nurses
weren’t at all panicked. No one had called a code blue, and no on
was yelling for a doctor, or to start some emergency protocol. I
slightly cooled my panic to the point where I probably wasn’t going
to pass out. At this time, the nurses had brought in another monitor,
and were busy hooking up the sensor, and the cable to it. Still
nothing on the second monitor, which bumped my stress levels a bit.
They were much closer to E than we were, so they could see he was
breathing, but we were further away, and couldn’t really tell what
was going on. The original monitor was rebooted, the cable &
sensor were tossed, and new ones were brought in and hooked up. At
last, there was a pulse on the monitor, and things were reading as
they should. Nothing was actually wrong with E, our anxiety and panic
had been brought on by a technical problem with the equipment, and/or
a sensor and cable failure.
E woke up only half
an hour after his procedure was done. They’re supposed to lie flat
for an hour so that the methotrexate injected into the spinal fluid
had a chance to disperse evenly, and also so the patient doesn’t
get a headache. Normally, E wakes early, is still coming out of the
anaesthetic, is in a bad mood, and needs to be held down until the
hour is up. The other day, for the first time ever, he woke up happy,
and was content to lie on his back, eat cookies, drink milk, and
watch YouTube.
After the hour was
up, E had a quick vincristine push, and we were ready to go. I had to
buy a new parking pass, and we had to pick up a couple of
prescriptions before we left the hospital, so we weren’t on the
road until about 2:20pm. Home around 3:30pm, and my mom was nice
enough to have a dinner all planned out for us, thanks!
All in all, an
exhausting, and stressful day, especially when you’ve been awake
since 3:30am. Viva la Cycle 5, and the start of steroid week....
