When you’re raising a CWD (child/ren with diabetes), hearing those 2 words in the middle of the night will make your stomach sink with anxiety. It’s a typical sign of high blood sugar. When your CWD has a high blood sugar in the middle of the night, it means you have to give extra insulin – which means you need to wake up often to do extra checks. In the case of Addy’s pump, it also means you have to troubleshoot her site — and pray that you don’t have to get up to change out her site and insulin. If you do have to change everything, you will need to do extra checks anyway to make sure the new site is working.
First of all, let me explain how a “normal” night progresses around here…
7:30 — Begin bedtime routine
8:00 — Everyone in bed (except Maya, who goes down with no complaints between 7 – 7:30)
10pm — Check Addy’s sugar. Pray for a good number, correct if needed
MN — Check Addy’s sugar. Pray for a good number, correct if needed
1 AM — Maya usually calls around this time. Get her back down in about 10 minutes.
2 AM — Depending on Addy’s MN sugar, she might need to be checked again now.
4 AM — Kaelyn comes calling. Give her a cuddle. If I’m still awake, I’ll put her back into bed.
5 AM — Jason is up for work and about to leave — alarm went off at 4:45. If Addy’s sugar needs another check, he’ll do it on his way out.
6 AM — Maya usually wakes up about now. If I’m lucky I can get her to sleep in my arms for another hour.
7 AM — “I’m hungry.” Time to put on a smile start a new day and repeat in about 12 hours. Keep smiling. No one wants to hear about how tired you are.
Here’s how last night went:
9:30 — Jason and “big” girls home from baseball game and into bath.
10:10 — Maya already down, other 2 into bed. Check Addy — she’s a little high, give correction.
MN — Check Addy – she wakes up complaining of thirst. Her number is good. Give her a drink.
1 AM – -Addy comes out crying, complaining of thirst. Her number is good. Set us both up on the couch…I can tell something is looming and want to keep her close. Maya calls – fell asleep in rocking chair.
2 AM — Addy wakes up crying, complaining of thirst. She’s high now, correct her and give her drink.
3 AM — Addy still awake tossing and turning on her side of the couch. I’m half asleep, but very aware of what’s going on around me.
4 AM — Addy confused and crying. Check her sugar – number is coming down, but still high. Notice that she feels warm. Temp 101. Give another correction — make mental note to watch her closely…could have over corrected at this point which would result in a low. Great.
4:30 — Have given Addy 8 oz of water. Need her to pee so I can check ketones. Jason is up trying to figure out the blood ketone machine, but our strips are expired so we can’t use it. Insurance doesn’t cover those strips. Great. Jason gets Kaelyn and puts her into bed with him hoping to avoid having her wake up once everyone is back to sleep. I call the attendance phone line to advise the school that Addy will be absent today.
5 AM — Addy’s sugar is better. She needs to pee now — ketones negative. (that’s good news)
6 AM — Maya calls. Jason gets her. That lasts about 20 minutes. I take her. We sleep for about 30 minutes.
7 AM — Addy crying. Sugar is good. Ketones still negative. Temp is up to 101.5 despite Tylenol. Give Motrin. Kaelyn in bedroom crying. Hear a bath running. She wet our bed. Great. Put on a smile. No one wants to hear about how tired you are.
Type 1 Diabetes 101 — You need insulin to survive. It takes energy for your heart to beat, lungs to breath, food to digest, etc. Insulin is the “key” that converts glucose into energy for your body to use. Addy’s body does not make insulin. Only God and Addy’s body know how much insulin she needs at any given minute of any given day. The rest of us just guess and hope we get it right. If we’re wrong, it could lead to a life threatening low blood sugar…or it could lead to a high blood sugar that, if not corrected promptly, could become life threatening as well. Before insulin was invented, CWD died within days. With insulin, diabetes is life threatening. Without insulin, diabetes is life threatening. Insulin is NOT a cure. It is the ONLY treatment available to keep my little girl alive. Enter illness…well, I’d need an entirely different BOOK devoted to the management of a sick CWD.
We don’t have any history of any type of diabetes on either side of our family. No one knows exactly why the beta cells in Addy’s pancreas stopped producing insulin. The most common theory is that it was caused by “a virus”. Yup. The same little bugger that might have caused an unremarkable cough or runny nose a few months before diagnosis. Maybe she picked it up at the Little Gym…maybe she got it from a shopping cart…maybe at a LLL meeting…maybe this…maybe that. It doesn’t really matter. Even if I could find the culprit, would it make a difference? I mean, seriously, I’ve NEVER met another mother who would have intentionally caused all of this by allowing her sick child to play with mine. As it stands, mothers have it hard enough without other mothers becoming critical and assuming the worst about them. Just look at my typical night. The last thing I need is another mother complaining that my kid got their kid sick when no one can ever really know for sure. No one did this on purpose.
Diabetes has turned our life up-side-down. We literally uprooted our family because I needed to be home to manage her full-time and we couldn’t afford to keep one parent home with the cost of living right outside of Washington D.C. Our savings were drained to cover moving expenses, diabetes supplies (which, by the way, costs about $10,000 a year — thank goodness we have good health insurance. Our co-pays only come to about $200/month), and to pay for rent in AZ while we continued to pay our mortgage in MD until the house sold. I was half way through my second pregnancy when she was diagnosed…we found out Jason got the job and began making moving arrangements the day before I went into labor. When we brought Kaelyn home from the hospital, there was no warm and fuzzy homecoming. No meal support. Nothing. My father lived 3 hours away and my mother worked full time. Jason’s family lived on the other side of the country. No one could put their life on hold to help us. I packed the house with my newborn in a sling, nursed her on demand, and took care of diabetes. And here we are. With very little support, 3 daughters, diabetes, and an insulin pump. Jason and I have been on, maybe, 3-4 dates since Addy was diagnosed 3 years ago. Thank goodness we make a good team.
Addy will never outgrow it. She will live with this life threatening beast every day until there is a cure. I don’t know when (or if) I’ll ever sleep through the night again. Every minor illness becomes a disaster. Her eyesight, kidney function, heart, brain, and limbs are at risk due to complications. Even if we manage to achieve superior control every day (which is impossible, btw), she is still at risk for a myriad of horrible terrible frightening things. Not to mention that diabetes could take her life.
Among many things, diabetes has taught me how to savor the most precious moments. Speaking of which, I have 3 little girls to hold…and one who needs a little extra TLC today. Gotta run.