Balancing Life and Levi

The worst thing about Diabetes is not all the pokes, midnight site changes or constantly having to watch what Levi eats.  The worst thing is how a simple cold, miserable as it is, can mean an emergency room visit, how the flu can mean an extended hospital stay or worse.  It’s when, what seems to be the correct treatment can actually be the wrong treatment.  It’s the fact that children with Diabetes and their parents are constantly walking the knife edge.  Such was the case for us over Christmas.

Up until winter break we had been surprisingly lucky, no one had been sick.  Levi was as mischievous as ever, and had most recently figured out how his inset device worked.  I had no idea he had learned how to cock the inset and shoot the needle until I was bending over putting laundry away when I felt a sharp poke in the hind end. Whirling around, I found Levi, a big grin on his face, the inset in his right hand, laughing and saying “pokey mommy”.  Unfortunately for that happy little imp, we had a very long week ahead of us.  

That afternoon the older children came home from school not feeling well.  Within three days all four kids were down with whatever virus had been going around.  Gabriel, Annie and William recovered quickly, Levi not so much.  He spiked a fever and we knew we were in for it.  Oftentimes with a sickness, especially fevers, Diabetic children will experience high blood sugars and if those aren’t controlled or stay high for too long, the body starts producing ketones, which can then lead to DKA (Diabetic Ketoacidosis), everyone’s worst nightmare.   Levi was no different.  On the second night of Levi’s illness, my husband started smelling ketones on Levi’s breath.  We weren’t too surprised, his blood sugar had been high and it didn’t help that we had given Levi Tylenol every 4 hours to control the fever, though Tylenol chewables are full of sugar, it seemed to be the lesser of two evils given Levi’s fever had been so high.  So, we increased his fluid intake, upped the amount of insulin he was supposed to get, and minimized the amount of carbs we were giving him.  

Finally, we managed to get his blood sugar within range, and usually once the bg is in range the ketones will disappear, but instead the ketones persisted.  For the next two days they fluctuated, high and low, while we went back and forth trying to decide whether to take him to the hospital or just keep pushing fluids.   Levi spent most of Christmas day either sleeping or lying on the couch, no smiles or playing, despite the new Christmas toys.  After yet another long night, we checked Levi’s ketones again, this time they were getting dangerously high.  While I was getting dressed trying to decide the best course of action Levi asked me “Mommy, can I go?” I smoothed his hair and told him “Yes Babe, you can go” but in my heart I felt an icy tendril of fear creep in.  For the first time all week, I could no longer ignore the possibility that if the ketones didn’t come down, even though we were doing everything by the book, what started as a simple cold could snowball into DKA. 

I called Sacred Heart Children’s Hospital in Spokane to see what his diabetic care provider would suggest, and they told me to stop using Tylenol because it can interfere with the insulin, and that as long as his blood sugar was good, to just keep giving him water, soda, anything he would drink.   So I headed to the store and stocked up on all the diet sprite, diet Gatorade, and unflavored pedialyte I could fit in my cart.  I am not a fan of Walmart, but that morning I had never been more grateful for a store that was open at 5am the day after Christmas. However, by noon Levi stopped drinking and at 1, we were on our way to the emergency room.  I was done, I couldn’t get him to drink anymore and the ketones were back, I knew an IV was the only thing that was going to help at that point.  When we got there I went straight to the front of the line and informed the receptionist of Levi’s condition and the need for an IV.  The receptionist looked at me and said that I would have to wait and see about that, he quickly realized his remark was a mistake.  Word to the wise, do not tell the mother of a sick diabetic child with high ketones to wait for someone else’s opinion.   Within minutes, Levi was in a room hooked up to an IV and the receptionist was still trying to recover from his tongue lashing.  

Several hours and three bags of fluid later, his ketones were finally registering in trace amounts. There was no indication of DKA, and all the blood tests and cultures had come back as either normal or negative, so we could go home.  While waiting for our discharge papers, the ER doctor and I were puzzling over the high ketones when we finally figured out what was going on.  Ketones are produced when the body is not getting enough energy from the sugars in the form of carbohydrates, and since Levi wasn’t eating much, and only drinking sugar free/carbohydrate free fluids, his body was not getting enough sugar for energy production.  On top of that we were giving him Tylenol which makes the insulin less effective, therefore compounding the issue, since the cure for ketones along with food and fluids, is insulin.  

Over the next couple of days, the ketones completely disappeared. Since Levi was no longer getting Tylenol, the insulin was working the way it should be and he was eating again. It took a while for Levi to feel better, but within the past two weeks he has regained his mischievous spirit and his rosy cheeks.  

As for me, I have been once again reminded that we walk a fine line and balance is crucial.