Part #2
Nov 21st Jordan was admitted for preop, his
g-tube surgery went very well, Neuro surg was in the operating room at the same
time because they were considering an operation to replace both ends of his
shunt as well. Once in surgery the neuro team decided the shunt was in great
condition and they didn’t want to touch it. Phew one obstacle hurdled. We were relieved
surgery went so well, hopefully this would be a short hospital stay 3-4 days.
Jordan healed well from surgery and general surg was impressed with how fast he
popped back considering everything he had been through. The neuro team did a
full assessment and they were happy with how he was progressing but they wanted
to redo the MRI just to make sure something alarming wasn’t happening. The plan
was MRI on Nov 24th and home that evening. We packed up and were
ready to go home. Jordan went down for his sedated MRI and when we came back up
to the floor the Neuro team was waiting in his room for us, they had the
results immediately. I was shocked to see them; they said “Sit down Mom you
aren’t going home”. They then told me the right side of his brain was showing
signs of swelling and they believed what happened to the left hemisphere back
in September was now happening on the other side. They said they had no idea
what was happening or what was causing this, we went through an investigation
plan, another LP (Lumbar puncture/spinal tap), CT Scan, Shunt Series in Nuclear
Medicine, Blood work, Metabolic testing etc. I took a deep breath and asked
them if this meant he could wake up one day and be paralyzed on the other side
of his body or suffer another extreme seizure and they said yes. Another deep
breath Mama. They said his brain had already been through so many traumas they
didn’t know how it would handle more traumas so soon. They immediately put him
on a 48hr EEG to watch brain function; 2 days later they came in and told me he
was having seizure activity on the right side of his brain which had always
been the healthy side of his brain. Again breathe Mama.
After initial tests came back the Neuro team started to
consult with other neuro teams, they had no idea what was going on in his poor
little brain or how to stop it from getting worse. They wanted to try a high
dose IV steroid but that was a last resort. His body was basically attacking
his brain as if it was a foreign entity. How does that happen? How does your
body decide your brain doesn’t belong? I was so confused and so were they. It
seemed every day they told me they had no clue what was going on and they were
just going to do more tests. The positive was Jordan was awake and very happy.
He was giving the nurses much entertainment and many laughs. They started
calling him the old man of the floor seeing as he was on the peads floor and
just 2 months away from technically being and adult.
We had now been in the hospital 2 weeks and the Neuro team
decided to try a round of IVIG meds to see if it would halt the brain cells
from dyeing. The left side of the brain that was attacked in Sept was now
shrinking because of the dead brain cells and the right side was swelling. IVIG
meds started and we wait…..Another MRI and no changes. Last resort was fast
approaching and we had a team meeting and decided the high dose steroids was
the best option. I asked if this was a life saving measure or just a trial and
error and was told both answers were possible at this time. They didn’t think
Jordan would survive anymore trauma so we had to try everything to stop this
from progressing. Everyone was so confused because clinically Jordan was well,
he was happy and alert. According to his MRI he should have not been. So we
started the steroids, after a few days they repeated the MRI and it seemed the
steroids were working, neither side of his brain was progressing. It seemed
Jordan was coming home for Christmas, so 6 days before Christmas we packed up
and came home with more steroids, a gtube for feeding, a slew of new meds for
seizures and a hope and a prayer. They assumed we would be back between
Christmas and New Year’s but at least he would be home for the holidays.
I honestly don’t know how I would ever get through all of
this without so much love from everyone. THANK YOU doesn’t seem to be enough,
friends who bring food to the hospital, coffee, the huge quantity of coffee I
consume, cards, texts, visits, hugs, Kleenex for the tears and jokes to make me
laugh when I don’t know if I will ever smile again. Family, my parents, aunts
and uncles, cousins, grandparents, I can’t tell you how much I love you all. Late
night and early morning calls because I don’t know if I am coming or going. To
Jay and my other kids….phew, you guys give me strength, love and so much
support. In an instant you drop everything to come to the rescue and help
Zander maintain some sort of normal life while I am dealing with everything for
Jordan. I don’t know how we all survive this and face each new crisis with
dignity but I know without each of you I couldn’t do what I do for Jordan.
Everyone calls me
superwoman/wonderwoman but without my team of avengers I could not fight these
battles.
Anyone who knows Jordan knows he hates Christmas so he wasn’t
too concerned with it but I was happy to have him home. I was exhausted,
emotionally and physically. However we pulled it off, planned Christmas, did
all of our shopping, prepared a meal to feed an army and celebrated Christmas
with family and friends.
Jordan progressed well at home and started showing signs of
healing, was this the Christmas miracle everyone wished for? Was this him
saying…nope not this time, I am not done fighting? It was both. He had good
days and bad days, he slept 22 hours a day but was gaining weight and when he
was awake he was very happy, his personality started coming back and he laughed
all the time. I was still so worried because we could wake up tomorrow and
everything could change. His 18th birthday came and went and he
still had good days and bad days. We had follow up after follow up with the
neuro team and they had no answers just more scratching of their heads and high
5’s.
We were given the go ahead to send him back to school part
time when he could stay awake long enough to last a day at school so we started
getting things prepared for that.
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