I'm thinking it all began around 12 AM Friday morning. Riley woke up to use the bathroom and started crying. He said his legs hurt. A quick check of his legs revealed no swelling, bruising, or anything out of the ordinary.
Michael put him back to bed, but within minutes, he was crying again that his legs hurt. Now, you have to understand, Riley hardly ever cries. If he does cry, it's usually because he's upset with his brother. He really never cries about pain. My office is in a health department. I hear kids crying all day long when they get their baby shots. Riley has NEVER cried while getting a shot. Even when he was a little baby. Pain just doesn't seem to affect him the way it does others. So, when he wouldn't stop crying that his legs hurt, I knew something was wrong. I just didn't know what.
I told him to come into our room, and he was limping. I let him crawl into bed with us (which I don't normally do) until he fell asleep. After he'd been asleep for a while, Michael picked him up and put him back into his bed. In a few minutes, he was crying again. This time I got up and gave him some Motrin and lay in his bed with him for a while. He slept the rest of the night without incidence. His sugars ran around the usual during the night. Nothing out of the ordinary. But, at 6:30, it was 102 and at 8:15, it was 149. That should have been my first clue.
I don't work on Fridays, so I was home with him that morning. He woke up and started playing his xbox. He said his legs were better, but his lower back was hurting. Hmmm, strange.
I fixed his breakfast and instead of scarfing it down like he usually does, he just sat there and stared at it. Then, he started to shake and asked for a blanket. When I went to wrap him in it, I brushed against his forehead. He was burning up.
I checked his temperature and it was 102.2. I started to feel panic rising up into my throat. My first thought is that he has a UTI, thus the back pain. Also, he'd had a cough that had been coming and going over the past week. Could it be pneumonia? Now, I really started to panic. I got my stethoscope and listened to his lungs. They sounded fine, so I didn't think that was the problem.
He started begging me not to make him go to the Dr. But, within minutes I was on the phone with his pediatrician's office. I made an appointment for an hour and 45 minutes later. We live an hour away from his ped., so it was a mad rush trying to get ready and get there on time.
Riley slept almost the whole way there. We didn't wait long once there. I made sure to stress with the Dr. about how he never cries and how he cried about his legs. Being a nurse, what I was thinking could be wrong was not pleasant and I was trying to force the panic down that was about to bubble out.
First, he said he was going to get Riley to pee in a cup. (which is exactly what I wanted done) Then, he decided to forgo that and do a CBC (complete blood count), which I was even happier with, since a normal result would dispel the fear I had creeping up inside me.
Before he did any of that, he listened to his lungs and looked into his throat. All which checked out just fine. But, then he looked into his left ear and asked Riley, "Does your ear hurt, bud?" To which Riley said no. "Well, you have a pretty bad ear infection there." I sort of let out a sigh of relief. Now, we knew the problem. He said his right ear was pink also.
They did the CBC, just to be sure, and everything came back fine. The achy legs and back probably just came from the increased temp. On the way out the door, the Dr. asked if Riley was allergic to anything. (We go to a very large peds. office with about 10 doctors in it) I replied with, "I don't know. Other that insulin he's never taken anything prescription." I could tell by the look on his face, he didn't even know he had D. "You mean he's almost 5 years old and has never had to take an antibiotic before?" Yep, never. Holden was a whole different story. He kept an ear infection when he was younger. Kind of ironic that my child who depends on medicine to keep him alive is otherwise as healthy as a horse. (Exactly where does that phrase come from? Don't horses get sick?)
I left the office with a prescription for Amoxicillin. By this time, Riley was hungry. We went to McDonalds (his choice, not mine) and while there I took him into the bathroom to check ketones. Even though his sugars hadn't been out of control, I thought I'd check to be on the safe side.
As soon as the urine hit the stick it turned a deep shade of purple. The panic started to rise again. We'd never had ketones like that before. I immediately called Dr. M's cell phone and left a message letting her know what was going on. She called back within about 2 minutes to reassure me and started her speech about what to do.
One of the first things she said was, "Don't trust the pump." She told me to keep his basal the same, but to give all of his boluses by syringe. Since he was spilling ketones it was very important that he get the insulin he needs. The only way to be sure that he was getting his insulin was by syringe. It made sense to me, but I didn't like it. I hadn't given Riley an injection since he started on the pump in March. When I told Riley about it, he didn't like the idea either. But, since then, he's been getting most boluses by syringe.
Even though I know he's getting his insulin, his sugars are still pretty much through the roof. His lowest sugar since all this started was 124, but that didn't last long. His next sugar was 220, then 349. His highest sugar has been 483. The average of all his sugars yesterday was 247. Yuck,not a good number. Thankfully, he doesn't seem to feel too bad. He did sleep more yesterday than usual, but for the most part, he seems to feel OK.
I started following Dr. M's instructions and by 5:30 last night, his ketones were negative. When he went to bed last night they were still negative. But, this morning the stick turned that darn purple color again.
To top it off, he was due for a set change this morning. This complicates things. You see, Riley ALWAYS goes low after a set change. To remedy this I have learned to decrease his basal 60% for 3 hours after his set changes. This helps immensely. He still might run on the low side, but it tends to keep those nasty 40s and 50s out of the picture.
He was 315 at his set change. I decided not to decrease his basal and see what happens. I don't want him to go too low. Dr. M stressed the importance of him having "plenty of sugar" to go into his cells and "plenty of insulin" to get the sugar into the cells.
His temperature is doing a little better. I was alternating Tylenol and Motrin about every 3 hours before to keep his temp at bay. Thus, helping to keep him from getting dehydrated and making his ketones even worse. (I'm thinking that's what brought the ketones back during the night. It's really hard to make a four year old wake up and drink an adequate amount of water in the middle of the night.) But, now we're down to having to take something about every 6 hours.
I'm hoping we're on the road to recovery and I'm hoping not to see that stupid purple color any more.