Friday, September 24, 2010

The dangers of "D"

So, since Anne was diagnosed in January, she has been quite healthy. Every time she got a minor illness, like a cold, she fought it off like a champ. Elly, on the other hand, does not fight things off so easily. Counting diagnosis, Elly has been hospitalized twice. The second hospitalization was due to a urinary tract infection and when the culture came back, it confirmed ecoli. Elly was diagnosed with urinary reflux the summer before and we were "waiting it out" to see if she outgrew it, as many children do. With this UTI, we were scared that she hadn't grown out of it and more drastic measures would need to be taken, like surgery. Luckily, after going through some tests, we learned that she has pretty much outgrown it and probably won't require any further medical intervention, at least on the urinary reflux front.

Fast forward to Labor Day weekend. Anne had been acting cranky and not at all herself. She was refusing to eat, which is very unusual for her as she is usually a very good eater, and she had started to develop ketones. Chances are, the ketones were starvation ketones, brought on by her not eating, because her blood sugar numbers were actually fabulous. I just wish her numbers were the way they were that weekend all the time! That Saturday, after talking with the on-call pediatric endocrenologist, we opted to take Anne into urgent care because we could rid her of the ketones by raising her basal rate through her pump but then they would come right back. Anne was also not drinking, which was a little worrisome. At the urgent care, they took some blood and a urine sample but both came up negative for any sort of bacteria. The doctor suspected a viral infection but due to her sister's history of UTI's, as well as Anne being diabetic, they decided to give her a broad spectrum antibiotic and have us come back Sunday. On Sunday, things still hadn't improved and Anne was still refusing to eat or drink so at urgent care, we opted to give her IV fluids, as she was getting dehydrated.

Once she began to get the fluids into her little body, she became an entirely different child! She was laughing, talking and playing like normal again. It was amazing. She was also playing with the gauze from her IV.

The urgent care doctor, just following protocol, again wanted to see us the next day, Monday which was Labor Day. I was not keen on that idea, as it was a "hurry up and wait" kind of thing. At urgent care, there are no appointments. You check in and they call you in the order received, unless an emergency comes in, then you will wait even longer. This is hard enough for anyone, let alone a 1 year old! Luckily, we had a wonderful nurse that was able to talk the doctor into allowing us to call him the next day and let him know how things are going, and we will physically come back in if things don't improve.

During this entire saga with Anne, Elly was doing great. She showed no signs of sickness, which we were so thankful for since things go south very quickly with her. Monday morning, Anne was still doing great. I did a site change on Anne, which Elly was wonderful and "helped" with. Then, 830am arrives. Elly starts to complain of a tummy-ache. Oh no. Please don't let Elly be getting sick now. Then, without warning, Elly throws up. And then she throws up again. And then again. 3 times in an hour. And then I check for ketones, and they are quite large (like 2.1). I page the on-call doctor again and talk with him about what we should do. We decided to increase her basal rate for a few hours to help lower the ketones and push fluids to help keep her hydrated. Unfortunately, every time Elly would drink, she would throw it up. By the time 12N arrived, I had had enough and decided it was time to take Elly into urgent care. Just as I was getting things together to leave, the urgent care doctor called the check on Anne. I told him Anne was great but Elly was not. He said to bring her right in and he would have orders ready for an IV as well as zofran to help stop the nausea. He told me that they will start her IV in the hall if they have to. I was so thankful that he called, because when we arrived at urgent care, we waited less than 5 minutes before we were whisked into a room the the doctor has reserved for us (he picked one with a rocking chair just in case I had Anne with me. I thought that was so sweet of him to think of us like that). The nurse was able to start the IV and drew blood to start labs.

After just one bolus of IV fluids, Elly looked and acted a lot better. Unfortunately, when her labs came back, her numbers told a different story. She had very large ketones and it looked like Elly was heading into diabetic ketoacidosis (DKA). They told us that we needed to go up to Doernbecher Children's Hospital because she needed to be observed at least overnight.

So, off to Doernbecher Elly and I go. We were lucky enough that she was able to keep the IV that was placed at urgent care so she didn't have to be poked again at the hospital. Once at the hospital, they drew more labs and her numbers had worsened. This information caused Elly to be admitted rather than "observed." Overnight, they pushed the IV fluids and we were giving her massive boluses via her insulin pump to flush out the ketones. By the next morning, her ketones were down to a moderate level and we were released. Once home, Elly was able to eat and drink, and within 24 hours she was back to her normal, 4 year old self.

The scary thing about this is that all Elly had (Anne as well) was a stomach virus, which was something that has been going around like crazy recently. To a child without D, a virus like this usually won't be a cause for too much concern. If Elly didn't have D, I would have just given her lots of TLC at home and if a trip to urgent care was needed for some IV fluids, that would have taken care of it and we would have been free to go home. But when you have D, a simple virus can prove fatal. At urgent care, the doctor told me that we caught this very early, because if we had waited much longer, Elly would have gone into DKA. I am still amazed at how fast Elly got sick. 3 1/2 hours. That was all it was. 3 1/2 hours. Way too scary.

The urgent care doctor also told me that he was amazed at how fast Elly got sick. I told him on Saturday when I brought Anne in the first time that I wasn't going to take any chances due to how fast her sister gets sick. I don't think he truly believed me that when Elly gets sick, she gets sick quickly. He believes me now! Sometimes I feel like I'm over-reacting when my girls get sick, or that some doctors feel like I am over-reacting, but I would rather do that and keep them safe.