Sept 2017-Jan 2018 Part #1
Well again I have not written in a while. The last 7 months
I have had a lot to say but didn’t know how to express it. I guess I was
waiting for clues from Jordan and he isn’t giving me a lot to work with right
now. So I will start in September 2017.
I woke up on a Monday morning to get Jordan ready for school
like any other day. When I tried to wake him he wouldn’t wake, not completely
strange for a teenage boy to not want to wake up on a Monday at 6:30am for
school. So I let him chill while I went and made his lunch and breakfast and
tried to wake him again. He again was resisting, I thought ok maybe he has had
a seizure through the night and he is really wiped out. So figured I would
change him and get some clean jammies on him and bring him downstairs to relax.
While changing him I noticed his right leg wasn’t moving and when I moved it,
it flopped over. He had no tone in his leg, at first I thought maybe he had
hurt himself and dislocated his hip. I started to change his shirt and I noticed
his right arm was doing the same thing as his leg. I know he wouldn’t have
dislocated a hip and shoulder at the same time that would be some freak
incident. I started to get worried that he was experiencing paralysis but tried
to stay calm. I finished changing him and carried him to the living room and
called his neuro team. After talking to them we decided a trip to emerg was
necessary.
Jordan arrived in emerg and went into another seizure right
away. We got meds on board and they called the neuro team to come right away. Then
started all of the tests and assessments. Jordan was indeed paralyzed on his entire
right side, his left pupil was fixed and dilated and he was very nonresponsive.
I was scared but remained calm. Neuro came back after the initial CT scan and
MRI and said they didn’t see signs of a stroke but wanted to do further
testing. We were admitted to the peads ward and followed by Neuro for 23 days.
Over those 23 days they told us he didn’t have a stroke, he did have a stroke,
he had paralysis, he didn’t have paralysis, they say something on his MRI’s and
they didn’t, his CSF (brain fluid) had increased cells showing signs of
infection but no infection or bacteria grew in the lab cultures. It was the
most bizarre 23 days. He didn’t wake up for the first 9 days of those 23 days
and when he did finally wake up he had no function, no emotion, and no
personality. For lack of better words the lights came on but nobody was home. I
had possibly my first ever complete breakdown when it comes to Jordan. When his
head neuro came in after day 10 and told me he had suffered a severe seizure in
his sleep the night before we came into the hospital, I broke down and sobbed. His
poor team has never seen me cry like that and I think they were worried because
they stood there staring at me like I had 3 eyes. They told me they still weren’t
sure what was causing all of this to happen but they thought he was suffering
from HHE Syndrome. Hemi convulsion
Hemiplegia Epilepsy Syndrome. They didn’t know what long term prognosis was or
how he would recover as it is not common.
Over the next few weeks Jordan started to
wake up a bit more and perk up, he still had no movement on his right side and
he had lost the ability to swallow therefor he was being fed through an IV and
an NG tube through his nose. I am so thankful for everyone’s support when I
cried, vented and needed company, food, coffee or just mindless chatter. It was
the longest 23 days of my life waiting for Jordan to give me some sign of
something. Finally he was discharged to come home with physio and a surgery
date for a permanent feeding tube. His surgery was scheduled for the end of
October so it wouldn’t be a long wait as he was discharged Thanksgiving weekend
(Canadian Thanksgiving) I was nervous bringing him home because the doctors
really didn’t know if this would get worse, happen again etc. but I knew home
was better than in hospital.
Thanksgiving week is the crazy week for my
business. I do 1200+ tarts and 200+ pies in less than a week. I had already
taken preorders before this all happened so I had no choice but the show must
go on. Thank goodness the nurses love defect pies as payment to take great care
of my son. I would spend 8-10 hours at the hospital every night, a few hours
with Zander and then all day baking and the nurses would page me if the medical
team needed me. It was a crazy week but we survived.
2 weeks later we went to the hospital for
surgery, when we got there we found out Jordan’s surgery had been cancelled for
an emergency case and lack of beds so we came home. His surgeon called the next
day and said they had a new surgery date for mid-November. Back home we went,
physio daily, fighting with the NG feeding tube that Jordan hated so he pulled
it out many times. I can honestly say shoving a tube down my sons nose and
throat repeatedly so he doesn’t starve is not the easiest thing I have done. Sometimes
I was frustrated, sometimes he was. Sometimes I had to walk away for a few
minutes and try again. But hey at least we were home and Zander got to spend
evenings with his Mama. I beat myself up sometimes when I feel stretched thin
between the hospital and other kids. It sucks not knowing where I should be at
what times. I guess we just all do our best.
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