How it all began - Diagnosis
Our story:
Kid #1 – he was 4 and a very even-keeled kid. He was potty trained at 18 months
old. (I’d like to take credit for that but it was self-taught with the right
tools provided) and was happy in his preschool. At the end of the school year
the kids were passing around a virus, a nasty cough that seemed to present as a
croup like cough in my kid, who often got a croup-y cough. We took him to the
Dr. who prescribed an inhaler. Not unusual. That weekend, gramma and grandpa
came out for a visit with their motorhome and we went for a little adventure.
We packed a few snacks, a few drinks and headed off to an exciting outdoor trek
a few hours away. Jared had a snack, a coughing fit, an inhaler dose, then fell
asleep. I should mention, at 4, he didn’t nap anymore. While sleeping, he wet
himself. Now under any other circumstances if I told you, or anyone, or
published that my kid had an accident I would be a horrible parent. In this
case, you are probably thinking ‘phewph that was us too’. When he woke, he was
more concerned with being thirsty than being wet. We passed him a water bottle
and faster than a frat boy on hazing day, he downed that water bottle and asked
for another. I knew something wasn’t right. I thought the inhaler was causing
this madness and called the Dr. asked for an appointment and when she asked
why, I told the nurse that I was taking my kid off the inhaler. She said ‘you
don’t need an appointment to take your kid off medicine that’s your choice’ I
assured her, something was wrong and he needed to be seen. They couldn’t see
him for a few days, ironically until the last day of school.
Fast-forward to the last day of school: kids are decorating their own frosting
on cookies and enjoying juice as a treat. Why not, right?! My Kid clung to my
leg feeling lethargic all the way to the Dr. that afternoon. When we arrived he
needed to go to the bathroom, I asked for a urine cup, they laughed and asked
why. I said, I checked google and I wanted him to have a urine test to be sure.
They obliged. The doctor came in and saw us. He said the strange behavior isn’t
so strange for a kid leveling up to Kindergarten. ‘Don’t worry’ he said. He
walked out to check on the test I had asked for. Moments later he walked in
with a different tone. He said “Call your husband, and a friend. Your friend to
take your daughter (who I also had in tow) and your husband to meet you at the
hospital. Your child has Diabetes.” As I recall it, I looked him in the eye,
and replied “you said he was scared to go to school!”
I am not sure how the rest happened, I just remember who
took my daughter, and being in the hospital. My husband did meet me there. The
ER was waiting. I guess that sugar cookie had made our sons blood glucose (BG)
700. I didn’t actually know this, but, it shouldn’t be over 150 for 2 hours after
a meal as a non-diabetic. We were well past that point. We also found out he
didn’t have Ketones (which we also later found out was an incredibly lucky
thing.) They weighed him, and we asked to weigh him again. At his Dr. apt a
week ago when he got the inhaler, he was 6 pounds more. For a 4 year old – that
is like serious poundage. It hit us both that in his bath, we noticed his ribs
and thought it was strange but it was an after-thought/realization. We also
blamed ourselves, how did we miss it, how did we not catch it sooner. They
assured us we were lucky that we caught it super early. His diagnosis story
could have been very different. We spent the next 3 days being taught how our
life would change, and then we were set free to replicate this new life in the
wild.
Kid #2- kid #1 is now 10 years old, and kid #2 is 8. This
story is about kid #2 but starts out with a strange happenstance of kid#1
ending up in the urgent care due to falling off a trampoline and (ultimately) spraining
his finger (yes T1 kids get hurt like normal kids too.) I was walking in the
door from work when my son told me he needed to go. It was dinner time, and I
knew the waiting room would only get busier and busier. I grabbed 3 protein
bars and his sister (kid #2) and we left. While waiting for his x-ray, she
started complaining about not feeling well. It is now 8pm and I am feeling like
a horrible parent and call my husband in for back up – tell him to stay with my
son (bring him dinner) and I would take my daughter home and feed her dinner
and try and get her to feel better. We got home, she plunked herself on the
couch and said ‘I have never felt like this before, I feel so strange, I don’t
feel sick, but I don’t feel well. Help me. I am so thirsty.’ I handed her, her
brothers G2 from his soccer game that was out on the counter, she opened her
throat like a baby bird and in one single gulp that whole double sized bottle
was gone. She asked for more. I told her to quit joking around. She was
confused at my statement. I said, you know what extreme thirst and feeling sick
means. She said “Diabetes?!?!” I said “Could be! So when your brother gets home
we are checking your blood sugar” Moments later with a splint on his finger
(which was far less attractive than the lego one I had made him last sprain) I
asked for his poker and meter, we needed to test his sister. He looked so
confused. He is a good kid and wouldn’t wish this on anyone (even his little
sister) We poked, and she was 380. Oh Sh*t. We knew a hospital trip was in our
future.
(Side script: when she was 4 and my husband was on a
business trip, she ate a donut at a birthday party and wet her bed, I freaked
out and called the endo – I checked her bg that night and she was 180, the endo
said, don’t freak out, if you are really panicked, take an at home A1C test and
see what the averages are. No one really studies what healthy normal kids bg’s
are post donuts and birthday cake. So the next day I got a 2 pack of A1C’s and
that night I used the first, her result was 4.2. She was fine. Relief. The
night of the finger sprain and G2, when I tested her, she was 7.4. Oh Sh*t.)
We were armed with 2 numbers indicating the inevitable. 380
BG and 7.4 A1C. We tested her for ketones and that was clear – phewph! She
wasn’t in danger. So we asked her if she wanted to sleep with us that night to
keep a close eye on her without letting her know what was going on. We packed
our bags for the morning and headed in to the ER. Things should have gone
smoothly right? Well, when we got there her bg was 149. 1 number below the
protocol for admission. I asked my husband to grab her anything from the coffee
shop we shall not name, and voila – her bg within minutes was back up to 300.
Then, it took… hours. After 3 more hours of waiting, my husband asked if there was
a diagnosis, or were we on a path to finding one. He looked at us with
uncertainty and said ‘we are on a path to finding a diagnosis’ my husband said…
does the path fork? Or is there really only one outcome? My daughter who was
working on being a better self-advocator who was quite shy shouted out ‘Do I
have diabetes or what?’ Good for her I thought, she had said what we were all
thinking. He looked at us all and said “Yes.”
Just like with our son, we were sent to the diabetes
education floor and we were about to embark on a journey with our kid #2 on one
we didn’t sign up for. She was a trooper. She did everything they asked, she
was brave and strong and actually said ‘This explains a lot, I wasn’t feeling
like myself and now I know why’ to be honest, I think she was a bit jealous at
all the attention her brother got and the pity from some older relatives. I
hated the pity. My kids aren’t victims.
The next morning at rounds, they called me and my husband out to rounds. They
introduced us as the ones who diagnosed our daughter. They said without us, she
would not have been diagnosed until possibly she would have arrived with later
staged diabetes due to us being told to ignore our data which could have led to
DKA (Diabetic Keto Acidosis) if let go long enough. I believe they later looked
at their protocol for variance over 1 number and looking at bigger pictures
during admissions. (like a1c etc). My daughter had been observing her brother
for so many years she asked if after 2 days she could go home instead of
staying for all three. They trusted us – and we were all happy to go home.
...and then there were 2.
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