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Posted 2014-11-17T05:42:00Z

Sugar, ahhhhh, honey, honey...

Having finally calmed down from an absolutely intense week, all I keep singing in my head is Sugar, Sugar by the Archies:

Listen to it -- guaranteed to cheer you up!

On Monday afternoon (November 10) Emmy had a funny tummy -- one round of vomiting, one round of diarrhea -- after which she perked up again and was fine. By Tuesday morning, Emmy was unable to keep any liquids down (absolutely no food whatsoever). My parents called me to let me know how she was doing while I was at work. She sounded unwell and very cuddly, but she can't tell you what's wrong or how exactly she feels. When I eventually came home from work, Emmy was listless and unable to focus her eyes at all. We called Urgent Care and I said I believed she was dehydrated, which was the deciding factor in sending us to the ER.

By the time we got there, Emmy was unresponsive and was taken in at Emergency level 1. She didn't even flinch when they took blood, etc. The told us she was hypoglycemic. We were admitted quickly and sent up to a room in the American Family Children's Hospital. The nurses were all fantastic. Emma's blood glucose was tested every 15 mins, then every 30, then each hour, until we got down to every 2 hours. That poor girl's toes have been pricked like a pin cushion.  

She was hooked up to IVs with glucose replacements as well as electrolyte replenishments, which brought her blood sugar levels up, but even by the morning with all that in her system she was still hypoglycemic. They ran some more blood tests which showed that her Carbon Dioxide was low, and her Anion Gap was high. This prompted a urine test. Emma had ketones in her urine. This all meant that Emma was in ketoacidocis, which is something that needs to be taken care of in a little child... and quickly! With lots of IV fluid and dextrose, Emmy's blood sugar stabilized over the course of the day, and by Thursday morning she ate a good breakfast and seemed happier. Still under the weather, but so much better than the day before! 

We were sent home after 2 nights in the hospital. Once home, Emmy did well eating until late in the afternoon when she stopped being able to keep any food down. I called Urgent Care (again) and asked for an anti-emesis medicine to try and help her get through the night. The nurse consulted with the on-call pediatrician who (after making us wait an hour for the return call) said no. He wouldn't give us a prescription for Emma's nausea. Her advice was just to "see how the night goes."

Thankfully, Emmy slept well and we checked on her in the night to make sure everything was okay. When I went upstairs to get Emmy in the morning, I found her resting against the side of her crib, staring into space. I took her downstairs and asked my Mum to hold her while I got her a drink. Emma refused all drinks. I held her and tried to figure out where she was health-wise. Her feet, despite being in big warm slippers, were like blocks of ice, and she was having trouble focusing. I called the pediatricians office and they said they would send a message to a nurse who would call us back. After waiting 20 minutes with no return call forthcoming, and Emmy's breathing becoming shallow and irregular, I called the office and told them we were going immediately to the ER.

Lo and behold, Emma was again hypoglycemic. She had been in ketoacidosis for several days, and simply struggling. Emma was admitted again.

The Doctors we have encountered at Children's Hospital were all very friendly and helpful. They all seem to genuinely believe that this came about due to one day of not eating because she was under the weather. I'm really skeptical. I fully accept that I have no medical training, but I'm learning the importance of parental intuition.

That being said, Emma's geneticist wants us to take her in for an appointment asap next week, and her neurologist was kept in the loop - we have an appointment with him next week also.

I wondered if recurring hypoglycemia could be responsible for Emma's staring spells or tremors, but Emmy had a significant staring episode while in the hospital almost immediately prior to being discharged. Because she was there, we were able to check her blood sugar levels immediately - they were fine. So, no correlation. Just an extra thing to now try to figure out.

We will get there. We will figure this out. It will all be okay. Thanks for keeping Emma in your thoughts!

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Comments (2)

  • Kristen Johnson
    Kristen Johnson

    There is definitely so much to be said for parental intuition. You know her better than anyone and have done such an amazing job of educating yourself about her various needs. You serve as the bridge between all of the specialists. You see things they can't observe or record during the limited time they have with her. Love you lady, and am continuously impressed with your strength.

    6 years ago · Reply
  • Christina Payne
    Christina Payne

    you are great parents and work hard for your family but it must of been hard for you both this last few weeks with Emma we think of you all the time wish we were not so far away and could help you Did the kids receive there birthday cards ok? Love to you all Norm & Chris XXXXXXXXXXXXXXXXXXX

    6 years ago · Reply