About a month ago, I spoke to Tyler’s pediatrician about
issues Tyler was having sleeping. He
sleeps very little, never soundly, and snores whenever he is asleep. Honestly, I thought we were probably going to
have to have his tonsils out. We had
been told when he was younger he may have to have this done. So, I wasn’t surprised when we were referred
to CHOA’s (Children’s Healthcare of Atlanta) Sleep Center to have a sleep study
done. We scheduled the appointment
without much concern. I made a list of
things we needed to do in preparation.
Then,
I noticed something. One night at
dinner, Tyler did something. It was just
a facial expression. Looking at him, I
thought of a friend I have grown up with.
She has epilepsy and has Petit Mal seizures. Something in the way his eyes and face looked
reminded me of her. The only difference
was his body stiffened up at the same time.
Another trip to the pediatrician and we had a brand new referral- this
time to a Neurologist. More items were
added to my to do list.
Our sleep study was scheduled before the Neurologist. Tyler and I spent a Monday night at Scottish
Rite’s Sleep Lab. He tried to sleep and
I tried to keep him from pulling off the cords that were measuring all the
things the Doctors needed to look at.
The next morning, our nurse came to disconnect him and casually asked me
who his neurologist was. Apparently, she
was seeing some seizure activity on his scans.
Of course, when I asked and she realized we did not have an actual
diagnosis, she refused to give me much more information. All she would say was our doctor should get
his report in about 7 days.
The next day, we got a call from Tyler’s doctor. It is never good when you get results back
quickly. His oxygen is dropping at night.
Oxygen was delivered to our home that night. Of course, my very strong 15 year old does
not want to wear it. It doesn’t stay on
long enough to do him any good. After
discussing this with his doctor, we quickly made his ENT appointment. There, we planned to discuss having the
tonsils and adenoids out to eliminate his sleep apnea.
Our Neurologist visit was scheduled before the ENT
visit. That visit gave Tyler a new
diagnosis. Tyler is indeed having
seizures, probably triggered by the drop in Oxygen and lack of sleep at night. My brain was on overload by this point. Even more things were added to my growing
list. However, despite random crying
spells and dealing with mom guilt where you blame yourself for not discovering
this sooner, I was dealing with everything.
I had a list, I had a plan, I had carefully laid out steps to
potentially correct all of these issues.
Because we knew we
were probably going to discuss surgery for the enlarged tonsils, Aaron took off
work and came with us to the ENT appointment.
Thank God! I was completely
floored when the ENT doctor told us his tonsils look great! There is no need to have them out. The problem is his tongue. Basically, it is
too large for his mouth and is obstructing his airway. There is a surgery to correct this. However, it is a more involved process where
they reduce and reshape the tongue. It
carries more risk, more hospital time, and a longer recovery. Well, that was not in my plan, I don’t know
which steps are coming next, and I have no idea what to even put on my
list. So I went home. I crawled in bed. I pulled the covers up over
my head and informed Aaron, after he found me, I lived there now.
Apparently, the ENT Doctor’s visit was the point when Aaron
and I stopped communicating to other people.
Not just friends, but parents, sisters, ect. We have been fussed at by several people this
past weekend alone for not telling them what we are now facing. Honestly, we did not knowingly do this. After we realized Tyler’s own grandparents
were unaware of this unexpected turn of events, we have tried to go through our
list and give everyone updates.
We meet with the head of the cranial facial department on
Friday. I have intentionally refrained from doing any research on what we are facing. Today, after talking to someone who’s child
had to have the same surgery, I broke down and did an internet search on
it. I stopped reading after the words
medically induced coma and trache. I may
move back into my blanket fort after the appointment. I put clean sheets and extra pillows on the bed, just in case. Hopefully, we can get some answers and a
better understanding of what our options are………so I can make a list. :)
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