Refresh//Recap...and then there were two... (2013)

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.