I'm
on my way to the emergency room for the second time this month.
I'm
flooded with emotions and numb at the same time.
After
a long weekend the last thing I want to be doing is going back to the
hospital, but I’ve already been so concerned with Keegan not eating
that it would be easier to be at the hospital and not be in charge
anymore... You know it's bad when I am willing to relinquish control!
Sometimes
I feel like I am bi-polar, and maybe others do too, but really it is
my life that is the roller coaster!
I'm
much calmer this time, and I'm not following an ambulance with Keegan
in the back.
Wednesday I
wake up after a really good night's sleep and started on my morning
routine. When I got Keegan from bed I noticed he was soaked and he
seems a little out of it (he could be sleepy?). I got him a cup of
juice and went to get the other kids up. I came back to change him
and get him dressed when I noticed his hands and feet were purple. He
drank all of the juice so that's good. Then I notice his eyes are
bright red, that's not so good. I realize he is really limp and
lethargic when I am getting him dresses. All of these things are
sounding off alarms in my head. Something is wrong, and it's
more than being a little dehydrated from peeing too much! I grab the
phone to call my husband so I can get a report on how dinner and his
bedtime routine went.
The night
before I went to bed as soon as my husband got home from little
league practice; I was unusually tired. I told him that Keegan and
Cooper needed to eat dinner, and I crashed.
My husband
tells me that he didn't feed Keegan or give him his medications
because he thought I did. Now there are alarms, and whistles, and
screaming, pure chaos going on in my head! This.
Is. Bad. I rush to get his
glucometer and check his blood sugar. My husband said he gave him a
pediasure but I found that cup still full on the floor; he hasn't had
anything to eat or drink since 2pm the day before and I can already
guess that his blood sugar is affected. It
says low, meaning it is so low
it can't read it.
I picture
him slipping into a coma. This.
Is. Really.
BAD!
I quickly
give my husband a summary of what's going on and tell him I need to
call an ambulance and hang up. I call and sit on the phone with the
dispatcher. I am debating in my head if I should or should not give
him the shot of Solu-Cortef. He was coughing the day before during
therapy and I wasn't sure if it was allergies from being at the park
that morning or if he was getting a cold. If it is a cold he should
have gotten a double dose of cortef the night before so now he would
really need some cortef. The dispatcher tells me not to give him
anything to eat or drink so he doesn't aspirate, so I definitely
shouldn't try to give him his medicine now. The paramedics and fire
fighters show up and ask me a few questions and check his vitals. I
tell them he needs his shot of Solu-Cortef, that I was waiting for
them to give it to him. They didn't. Their primary
concern is getting him to the hospital.
I often make
the mistake of thinking someone knows more than I do, or is more
qualified than I am to make medical decisions regarding Keegan
because they have formal training. What I need to accept is that my
on the job training is more extensive than any of their education can
provide. Keegan's disorder isn't well known. As far as I know
paramedics are not trained to deal with adrenal crisis like they are
more common emergency situations. I hesitated when I should have
acted and followed my instincts. Lesson learned!
I've heard
many parents talk about about scary situations with their kids in
adrenal crisis. I've even heard heart wrenching stories of kids dying
from panyhypopituitarism... It never really hit home because we
haven't had to deal with anything this serious.
Now
I have and I can say that It.Is.A.Big.Deal!!
We've had
our fair share of health scares with seizures, respiratory distress,
pneumonia, and RSV. A common cold would result in a week long stay in
the hospital a couple years ago. I have never seen Keegan look so
awful! We spent four very long days in the hospital. Keegan was
dehydrated, had a high fever, and a cold. He desperately needed his
medications to get his hormones in balance. I still had to insist
that he get Solu-Cortef when we got to the hospital, ugh! Eventually
he got plenty of fluid (too much in fact!), and his medications. The
Doctors were surprised how quickly Keegan rebounded once he got his
medications- even his endocrinologist, and that's her job! This
experience really drove home the lesson for me... Keegan's
disorder IS
life THREATENING!
Not that I don't take it seriously; I
never realized how the right circumstances could be so terrifying.
On
a side note, I have to include a sweet
story from this crazy stressful time that brought me great comfort. I
can only thank God for making it so. Conner woke up in the
middle of the night Tuesday (or early Wednesday morning to be
precise) and decided to make lunches for my husband and I. Then, he
woke me up to tell me about it; after looking at the clock and
telling him that was sweet but crazy, I sent him back to bed.
When I woke up that morning from my blissful sleep I remembered him
getting up and laughed to myself, he is so sweet but I was going
to be home for lunch. Turns out that lunch came in quite handy
because I didn't have a chance to even take a drink of my coffee much
less eat anything. As I was rushing to throw everything I could think
of into the van so that I could follow the ambulance I saw My
lunch. I smiled and grabbed it. I am so blessed to have such a
sweet and thoughtful son, who would wake up in the middle of the
night and make me a lunch neither
of us knew how badly I would need. I am so thankful
for a God that provides for me and uses such creative ways to bring
me joy during a very dark day.
**PSS I found this website today http://aiunited.org/ that is bringingraising awareness for adrenal insufficiency! Wish I found them sooner... all of this information is so crucial! Check it out for information and even free resources you can send to local first responders and school nurses. They are pushing to have emergency protocols changed so that first responders are educated on how to recognize and treat adrenal crisis... In hopes of stories like mine and WORSE not repeating!
**PSS I found this website today http://aiunited.org/ that is bringingraising awareness for adrenal insufficiency! Wish I found them sooner... all of this information is so crucial! Check it out for information and even free resources you can send to local first responders and school nurses. They are pushing to have emergency protocols changed so that first responders are educated on how to recognize and treat adrenal crisis... In hopes of stories like mine and WORSE not repeating!
