Three words no D parents wants to hear...
"I threw up."
Those are the words we heard about 2:30 Monday morning. Luckily she had been running low (we should have known...) and her pump had been shut off or we would have been in serious trouble.
For those who may not know, a stomach bug is especially difficult with type one diabetes. Here's why... when you have a tummy bug, food does not digest normally. This often causes low blood sugar before a person actually gets sick. It also causes lows during and after. Another issue is if the person throws up food that they have been bolused for. When that happens, they have insulin in their body and no food... that means low blood sugar. How do you treat low blood sugar? Food. But that doesn't work so well if you're throwing up. Then, as with any illness, you develop ketones. Everyone gets ketones when they're sick. But when your pancreas works, it gives you enough insulin to bring them down safely. When you have T1, you're not making insulin on your own. If you want to get your ketones down, you need fluids and insulin. Both of those are difficult when you have a stomach bug. Because if you're not eating - insulin is going to make you go low. And if you go low, you need food. And... you see the cycle here. Add in that ketones make you feel sick to your stomach and throw up when they get high. And they can be very dangerous and lead to ketoacidosis (which is life threatening) if not treated. It's just a big 'ol mess.
Sweets spent the morning on the couch feeling poorly. She had a fever and ketones were on the rise. I had her sipping water and trying to eat a popsicle because I knew she needed insulin... but her blood sugar was hanging around 100. And that wasn't high enough to give her additional insulin. At least without food.
We've dealt with a few tummy bugs in our years with T1D. It's never fun. But we've learned what to do. We know how to handle things. And we know that no one wants to go to the ER. So we do our best to manage it at home.
The ER just isn't fun. It means IV's which is good for getting fluids and medicine to fight the nausea. But it's not so fun for little girls who don't want any more needles. It also means ER doctors who are trying their best but often don't know all that much about T1D.
We do everything we can to stay out of the ER.
But with every illness (at least the puking ones), there reaches a point when I start getting nervous and ask myself, "How much longer are we going to be able to handle this on our own? At what point am I putting her in danger?"
The tipping point.
That point came for us Monday afternoon. She was still throwing up. Nothing was staying down. And ketones were skyrocketing. (Blood ketones were up to 2.5. Anything over 1.5 is considered large.) Her little lips were dry and cracked. She had bags under her eyes. And her color was grey. She looked really bad. Really bad. Like death.
So, I called the diabetes center who told us to take her to the ER.
The diabetes nurse I talked to was concerned that her blood sugar was going to drop on the way to the hospital. She was afraid with as sick as she was and with nothing going in that the Glucagon wouldn't work. That scared me - I had not heard that before. Not much scares any more... but that did.
We rushed around getting ourselves ready and put her in the car. Luckily, we are about 20-30 minutes from the Children's Hospital ER. But that day seemed like an eternity. The entire way there, her blood sugar was steadily dropping. Until she was reading in the 60's. I was giving her one smartie at a time to try to at least hold her steady.
We get to the ER... and we had to STAND IN LINE. Apparently, every sick kid in the area uses it as a doctors office. That's a blog/rant for another time. But seriously. They took us right back and got her into a room. They did blood work and we waited.
It's times like this that make me lose patience with the ER. I know they are doing what they have to do. But I knew she needed fluids. However... we waited.
The ER doc came in and told us that her blood work looked good and she had no ketones. Say what?!? We told him what our meter was reading and he said he would call endocrinology.
He came back shortly to tell us that while on the phone with endocrinology, he realized he had misread the report and yes, her ketones were indeed large.
At this point, I'm thinking.... Fantastic. Well, you can probably guess what I was thinking!
They gave her fluids and some zofran via IV.
And then the new ER doc arrived. She came in to talk to us and after a few minutes said, "You folks obviously know what you're doing. What do you think we should do? What would you do if you were in charge of her care?"
It was like the angels started singing!
We were glad she was getting fluids and zofran but our concern was that her ketones were still large. At this point her blood ketones were reading 3.2. I have never seen anything that high before. I didn't want them to release us before doing something about that or we'd be back in the same boat.
I suggested a glucose drip so we could give insulin.
She agreed and called endocrinology again. They did not agree. They felt that she needed to try eat. If she could hold down the food, we could bolus. If she couldn't, she needed to be admitted.
So she ate. A little. A few bites of soup. A couple bites of banana. And some Froot Loops. She loves her Loops but rarely ever gets those.
And it stayed down.
So we were able to give her a little insulin! Yay! Before discharging us, they took her temp which was up to 102. But home we went with some ibuprofen.
Waiting for Daddy and the car... always smiling!
By morning, her temp was down. Ketones were down. They were still large but a lot lower than they had been.
We thought she was on the mend. We thought she was better,
And then she threw up again.
And ketones went back up.
And her fever came back.
We spent the next four days in this limbo. She felt sick because her ketones were too high. She needed insulin to bring them down. But she couldn't eat... and if she couldn't eat, we couldn't bolus. And if we couldn't bolus, we couldn't bring down the ketones. And... on and on.
She was really sick. She laid on the couch and didn't move. If you know her, her sitting still is NOT a good sign. She wouldn't eat. She wouldn't do more than sip water or lick a popsicle. Bg hovered between low and 110. And ketones stayed high.
And so I spent the next four days at the tipping point.
Illness doesn't usually faze me much. I know what to do. I know how to handle things.
But this time... This time I felt like I was constantly walking the line between being able to handle this and.... not.
And as much as that made me nervous, it also surprised me.
I've been going along thinking I've got this. That I can handle what diabetes throws at me. I may not be perfect at it... But...
But what if I can't handle it?
I've been all "diabetes can't stop her.... diabetes can't stop me... people with diabetes can do anything everyone else can do..." And all of that is true...
But maybe that's made me forget that diabetes doesn't play fair.
That diabetes isn't easy.
That it takes a lot of work.
That it's still dangerous.
That it really just sucks.
Sometimes it's easy to forget. That while diabetes has made your kid incredibly tough and amazing... it's done it through trial by fire. It didn't just happen by accident. It happened because your kid (and yourself) have stood tough through all the crap diabetes has thrown your way.
All the testing, carb counting, bolusing, supply ordering, site changes, insurance fighting, decision making, temp basals, corrections, ratio changes, ketone testing, doctor appointment, lows, highs, needles, prescriptions, lancets, strips, alcohol wipes, cgms, pumps, hospital visits...
All that. And more.
We've handled it.
And so... when push comes to shove... I know we'll be able to handle this, too.
Even when we're at our tipping point.
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I couldn't resist. Sorry about the language - but sentiment is right on.
"Illness doesn't usually faze me much. I know what to do. I know how to handle things." <---- But not for so many days in a row! Ay yi yi the part where the ketones went down and we thought the nightmare part was over and then the ketones came back! You must be exhausted.ReplyDelete
My T1 person has not yet had a flu or other vomiting time since his diagnosis. I dread that day. Your post has really helped me understand what happens with a barfing person and how to handle it/what to watch. Thank you!
I so hear you! Stomach bugs are the worst. We just got done with ours a week ago and it was not fun. Fortunately we were able to avoid the ER. Our Endo gave us an Rx of Zofran at a regular visit, so we filled it and keep at home for these situations. It did not stop V's vomiting completely but it helped to minimize it and keep liquids down.ReplyDelete
I cannot believe ER people did not know what to do. They misread ketones? Wow. Props to you for not biting their heads off.
Loved reading this. My 2 year old has type 1 and is on her 2nd stomach bug this year. It is so scary when she won't eat and her blood sugar keeps falling, and her ketones keep rising. All I want to do is get food in her so I can give her insulin to get rid of the ketones. After the stomach bug is over, it is just as scary. I can feed her and feed her, and her blood sugar will not rise because she is just not digesting the carbs. When she becomes low, it is very hard to rise her sugar with a fast acting carbs because her stomach just won't digest it. Diabetes is so scary!!!!ReplyDelete
I am a mom of a Type One Diabetic. We have been through 5 -6 stomach bugs, ER etc.. in the 5 years she has had diabetes. What I've learned is to give them one part gatorade three parts water in small sips (1 tsp) every 5-10 mins, don't rush it, when they stop vomitting and are ready for it. Give them their ketone dose and keep checking blood sugar every 10 to 15 minutes. Keep giving small sips of Gatorade mixed with water. This will bring up the blood sugar just enough to give the insulin and get rid of the ketones. This process can take a few hours but will keep you out of the ER. Do not give them food!!! It can make them start vomiting again. Do not give them juice!!! This will make them vomit again. When they are able to eat food, give them crackers, toast, easy to digest items. Do not give insulin for the food. Give them Gatorade mixed with water, you can gradually increase the amount of Gatorade, and give their ketone dose. Keep giving them Gatorade in the next week to keep the blood sugar up until they are digesting food again properly. I hope this helps, I hate the stomach bug too, it has been one of the most challenging parts of dealing with this disease.Delete
We're going through this right now, 4th day outta school, 6th day since the 1st throw up...thank you for sharing, I'm feeling on that fine/not fine line all day.ReplyDelete
This is our 4th day of having this bug. My type 1 son is just not himself. How long does it last? we've had enough already :(ReplyDelete
Thank you for posting this. I'm actually a T1, diagnosed at age 3, now approaching 40. I travel the world for work, but with each trip, I do have to have a "rest" day of downtime to relax or I'll get sick. I'm a bit buggy in Iceland right now and was just looking up stomach and ketones and came across this. I'm weeping because your words about diabetes not playing fair seriously hit home, but I can honestly tell you, I wouldn't be who I am without it, and that is true of your daughter, too. Diabetes sets important lifelong lessons and discipline in all areas of one's life.ReplyDelete
And man, I had that stomach so often as a kid, before pumps. Ugh!
All the best to you and yours!