I
started writing a post a couple of days ago. I finished my first paragraph, and
was halfway through my second when I went to save the document. My
software crashed, and ate my work. I attempted a recovery, but all I
was able to retrieve was a blank document. I thought about a do-over, but I was frustrated, and decided to abandon it instead of re-writing. My lost post was about our hospital stay from late November to early
December. During our stay, I was fairly open and candid about what was
happening, and I’ve debated re-hashing the story, especially having to do a re-write after having already starting. In the end, I
thought back to one of the reasons why I started writing. I wanted to
immortalize our, and E’s experiences. E is too young to remember
most of this, and he’s obviously not going to write any of it down.
In the end, even though many people who might read this are already
aware that we were in the hospital for an extended stay, it is part
of our story, and deserves to be recorded here.
Day
0: Thursday
I
received a text from my wife on Thursday November 28th
in the afternoon. E had been dropped off at my in-laws’ house, she
was leaving for work, and E had an elevated temperature. She asked if
I could leave work should E’s temperature spike to a full blown
fever. E was okay for the afternoon, but in the evening, his underarm
temperature jumped to 37.9°C,
so I alerted our satellite hospital we were on the way, grabbed some
hospital-stay food, threw a couple of bags together, and drove to
Scarborough Centenary. I
was fairly sure we wouldn’t be staying, but I didn’t want to get
out there and find myself up the proverbial creek should things go
sideways. E was accessed, blood was drawn, and then I tried to
contain him in the POGO room. A couple of hours later, our nurse came
back with the results of the bloodwork. Anything below 0.5 for
neutrophils is considered neutropenic, and neutropenia + fever =
hospital admission. The nurse had a bit of a look on her face &
told me that E’s neuts were 0.4, so we’d be staying. @#$! I
carted our stuff into room 737, blissfully unaware that this would
become our home for the next 8.5
days.
Day
1: Friday
E
had bloodwork done early in the morning, and by about 8:30 – 9:00,
we found out his neutrophils were still 0.4. At home, my wife got J
ready, and delivered to school, and made arrangements with her mom to
pick him up afterwards. She packed her own bag, and joined me at the
hospital mid-morning. E is an energetic, and exhausting kid, so we
decided that we were both going to stay at the hospital and take
turns chasing him around because he never sits still. Nanny had a
sleepover at our house with J, and we were able to do a video chat
with him to say hello.
Day
2: Saturday
Daily
bloodwork: neutrophils
were still 0.4. At the time, we were hopeful that they’d jump up to
or above 0.5 on Sunday morning, and they’d be able to discharge us.
That morning, my wife returned to the house to grab some more clothes
& food, and also to pick up J. While
my wife was gone, E tugged a little too hard on the line from his IV
to his port. The needle in the port didn’t come out, but it
dislodged enough that the drip wasn’t going in properly. Instead,
the saline was pooling under his skin, and some of it was leaking out
the needle hole. I only discovered it because E’s shirt started
getting wet in a circle around his port. I thought he might have
spilled water on himself, but when I lifted his shirt, the dressing
around his port was all soaked, and I quickly figured out what had
happened. I carried him to the nurses station, and asked if someone
would be able to re-access him. My wife returned after lunch, and we
had both of the boys with us at the hospital on Saturday afternoon,
and overnight. The pair
of them were their usual matches-and-gasoline selves when they’re
together, and were running around the floor chasing each-other,
laughing, shrieking, and doing their bouncing-off-the-walls boy
things. I was horrified, and was (unsuccessfully) trying to keep them
calm, under control, and quiet. Luckily, there were very few other
patients in the hospital at the time, and the nurses were happy to
see the brothers up & about, and having fun.
Day
3: Sunday
Daily
bloodwork: neutrophils dropped to 0.3. That was a bit of a punch to
the gut, since Sunday was >48 hours, and we were hoping to be
released if his neuts had have bumped to 0.5 or above. We
had port access incident #2 on Sunday. I had picked up E to carry him
back to our room for a diaper change. When I set him down on the bed,
I noticed that his shirt was somehow covered in blood. Lifting up his
shirt, I noticed that the cap on the end of the access line tubing
had somehow came off, and blood was gushing out. There are little
clips on the tubing to clamp off the flow & I though quickly
enough to activate one, and that stopped the blood. We called the
nurses in, and they checked him over. He didn’t need to be
re-accessed, but they brought a spare cap for the end of his access
line, and attached it, to permanently solve the blood issue. Also
that day, one of our
nephews was having a birthday party that afternoon. Due
to the neutrophil counts dropping,
we obviously weren’t going to make it to that, but
we could still get J there.
We asked for a day pass, which the on-call pediatrician reluctantly
gave to us. We had to
be back by 6 for E’s next antibiotic dose, so we
packed up J, and E, and drove through a snowstorm to my in-laws’
house. We dropped off J, and they would take him to his cousin’s
birthday party. We returned to our house to yet again grab a few more
clothing items, and stopped at a grocery store to pick up some food
to keep in the hospital room. Because of the snow & gross road
conditions, J slept over at my in-laws’ house that night & my
mother-in-law drove him to school the next morning.
Day
4: Monday
Daily
bloodwork: neutrophils dropped
to 0.1. Our
regular oncology team returned, and promptly told us that if they had
have been working on the weekend, they would have sent us home
Sunday. E’s fever had been gone since late Thursday night, and 0.3
neuts
weren’t terrible, especially when weighing isolating yourselves at
home, versus all the germs E could possibly pick up in the hospital,
including
from the shared toys. Now
that we were at 0.1 neuts, we definitely wouldn’t be going
anywhere. Arrrrgh.
While chasing E
around, I noticed there was quite a large conglomeration of nurses
around the nursing station. Two weeks ago, when we had to take a trip
in to the satellite hospital for fever, after having had been at
SickKids during the day, there was a really nice & pregnant nurse
who had been taking care of us. It turns out she had her baby over
the weekend, and she was bringing him up to the pediatric floor for
an appointment. It was nice to be able to bump into her to pass along
our congratulations.
Day
5: Tuesday
Daily
bloodwork: neuts held steady at 0.1. Other counts were dropping as
well, and
his hemoglobin was down to a level where the standard procedure is to
give a transfusion. Blood was ordered, and a few hours later, some O-
arrived on the floor, E was hooked back up to the IV, and he received
the transfusion. By the time it was finished, you could notice a
difference in him. E had been quite pale the past few days, and now
you could see colour back in his face. He ended up having a small
reaction to the transfusion; he had some small hives appear in
various places on his body. It’s not an uncommon occurrence, and E
was prescribed Benadryl every 12 hours. Tuesday
was also the day that we received a Love Box from The Super Sophia
Project. There were
cars, crayons, paints, and a few other nice goodies inside. E let out
a shriek of excitement when he saw the cars. He was so excited!
Day
6: Wednesday
Daily
bloodwork: neuts held steady at 0.1. By this time, the days are
turning into a blur, and the frustration is creeping in. I really
don’t remember much about Wednesday, other than I went back to the
house to bring home dirty laundry, and to pick up clean clothes &
some more food. At
this point, E had been on antibiotics for 6 days, and his stools were
basically liquid. His poor little bum was so chapped & red, and
he was soiling through his diaper to his pants almost every time he
went. Job #1 at home was to get as many clean pants for E as I could
possibly find. My
mother-in-law was still staying at our house with J, taking care of
him, and getting him to/from school. Wednesday was the last day she
was able to help, so after
that, we had to call
in the cavalry.
Day
7: Thursday
Daily
bloodwork: neuts still held steady at 0.1. Another day where we
wouldn’t be getting out, though every day, our nurse practitioner
was advocating for us to go home to our oncologist at SickKids. We
heard that we would likely be discharged the next day, a Friday. Our
oncologist wanted one more day of bloodwork, and she was actually
more concerned to see which way E’s hemoglobin was trending after
Tuesday’s blood transfusion. My mom came out on the GO train; I
picked her up at Guildwood,
and she came back to the hospital for a quick visit before driving my
car home so she could pick up J from school.
Day
8: Friday
Daily
bloodwork: neuts still held steady at 0.1, but our oncologist was
satisfied with E’s hemoglobin levels, so we were going to be
discharged in the afternoon! Finally! Our oncologist had also said
that E’s immunoglobulin levels were low. This could be the reason
why he’d had a cold hanging on since the middle of September, and
why his netutrophils cratered at 0.1. It wasn’t a rush, we didn’t
have to do it that day, but they wanted to give him an infusion of
immunoglobulin, also known as IVIG. Immunoglobulin itself is not
blood, but it is a blood product, and there is a small chance of
having a reaction to it. We decided to proceed with the IVIG despite
the small risk, because it would be a boost to his immune system, and
also because Christmas was on the horizon. We’d just had 8 days in
the hospital, and we didn’t want a repeat of 2017 when we spent
Christmas in the hospital. Because of the risk of a reaction, vitals
are taken before IVIG is started. It begins at a low rate, with more
vitals being taken about 10 minutes later. Assuming everything is
okay, the rate of flow is increased in steps until it is at full
flow. Everything went okay with E, and the flow was stepped up to
max. His vitals were checked on the max setting, and he was fine.
About 5 – 10 minutes after the check of his vitals is when things
started to to sideway. E stood up, hunched over, and started grunting
like he had to poop, or his tummy hurt. Shortly after, he started
shaking uncontrollably. I ran to get our nurse practitioner who
stopped the infusion, gave him a steroid, Tylenol, Benadryl, and
oxygen. E
was having
a bad reaction to the IVIG at full flow, and this caused his
temperature to spike, and his heartrate to jump to 180. The
shaking was a by-product of the fever. Normal
resting heartrate for a 3 year old should be around 120. I
wasn’t overly impressed with the on-call pediatrician, who took his
sweet time
coming down to our room from the ACU (acute care unit). He didn’t
even check E over, he just stepped into the room and told us that the
reaction was because he couldn’t handle the IVIG at full flow. He
said re-start it at a lower rate, let him finish up, and then he
left. Uhhhhhh, @#$! you – there’s no way E was getting any more
IVIG that day after that sort of reaction. Our nurse practitioner &
RN agreed with our sentiments 100%. E had gotten about 75% of his
dose, it would provide a boost to his immune system, and they both
thought it was best to shut it down. They had to fill out some
paperwork, an incident report I think, and we also
found out that no,
after the reaction, we wouldn’t be going home that night. We would
also be transferred to a room just down the hall in the ACU for the
night. E was hooked up to a monitor
to check his pulse, heart rate, respiration rate, and oxygen levels.
By around 7:30, his fever was pretty much gone, and he was asking to
get out of bed because he wanted to run around and play.
Day
9: Saturday
Daily
bloodwork: neuts actually jumped to 0.2! Saturday
morning, J had a birthday party for one of his classmates to attend.
Since we had not been discharged on Friday as planned, I asked my mom
if she was able to take J, because he had really wanted to go, and I
didn’t want to cancel last minute. On
Friday, after all of
the excitement (excrement?) with E’s adverse reaction to the IVIG,
SickKids had sent
instructions to discharge us once E was considered stable. At around
9:30am,
the pediatrician had cleared him, and we were ready to go! An
hour later, after
about 3 trips of carrying our stuff to the car, we signed the
discharge papers, and we were on our way. We
were home a bit after 11:00am, and my mom & J returned from the
birthday party around 12:30pm. J
was quite happy to see us, and his brother home. J was acting off for
most of the afternoon, and by bedtime he felt warm & had a fever.
He was feverish on Sunday, as well as on Monday, so he was kept home
from school. A few days later, J started breaking out in spots, and
we realized that it was Fifth disease, also known as Slapcheek. My
wife came down with it too, and so did E, but his fever did not
return, so we didn’t need to go back to the hospital. I must have
had it as a kid because I didn’t catch it, and I seem to have
immunity. My mom stayed Saturday afternoon, cooked a nice stew for us
for dinner, and stayed overnight until Sunday. On Sunday, my dad
drove out to pick her up, but they also stayed to watch the boys for
a while. This let us go out for a little break, to have lunch, and to
also get caught up on some Christmas shopping since we had lost some
time and had fallen behind schedule due to our hospital stay.
Epilogue
I’d
like to acknowledge, and offer thanks to our families for all of
their help during this hospital stay. Without their help taking care
of Jonah, those 8.5 days would have been exponentially more
difficult. The nurses, our oncology team, hospital staff, and doctors
did a wonderful job of caring for us. Thank you to everyone on the
pediatric floor of Scarborough Centenary! I’d like to acknowledge
The Super Sophia Project (https://www.thesupersophiaproject.ca/)
for
the Love Box that E received. They put together packages, known as
Love Boxes, which are given to children who have a hospital stay.
They rely on donors & volunteers for
items, and sorting. They are working on becoming an accredited
charity, but they’re worth of a donation of time, items, or money
if you’re looking to support a great cause. As an aside, Sophia was
diagnosed with leukemia at age 2, completed treatment at age 4, and
is now a 5 year survivor. I’d also like to express my gratitude
toward Ronald McDonald House. There’s not an actual house at
Scarborough Centenary, but they have a room which is staffed mostly
by volunteers. In this room, you can get food, coffee or tea, snacks,
or use it as a respite area if you need a bit of downtime to
decompress. They have also have sleep & shower facilities. We
didn’t use the sleep/nap rooms, but we did take advantage of the
shower facilities. From personal experience, let me tell you how much
better a simple shower can make you feel, after you’ve been
confined to a hospital for days on end. If
you’re looking to make some end-of-year donations, Ronald McDonald
House is a great organization which is directly helping parents and
families of hospitalized children. Donate at
https://www.rmhctoronto.ca/How-to-Help/Donate-Now.aspx.
Lastly, a big thank you to anyone, and everyone who offered support,
words of encouragement, or just lent a sympathetic ear. It was a
difficult, trying experience, and I’m crossing my fingers for
smooth sailing until EOT.
