Thursday, August 16, 2012

Part 1 update

Aside from Addison's exciting developments, we've been struggling with Audrina. Her possible pertussis turned out to thankfully be just a summer cold and she had a few good days after she recovered. It seems like there is always something going wrong with her. One minute she's fine and the next she's terrifying us... its exhausting and stressful.

Last Wednesday, the 8th, Audrina began peeing dramatically less frequent. She was changed and put to bed at 10 pm and at 8am was still pretty much dry. She is being fed 24 hours a day continuously through her tube now. So she is getting about an ounce per hour around the clock.
I called the pediatricians office and they saw her Thursday, so now at this point she had decreased urine output for 24 hours. Otherwise acting pretty normal - definitely no obvious signs of dehydration, no fever, etc. She normally has soaking wet diapers so this was very new to her. We saw one of our peds other docs in the practice, who we have always liked. She didn't seem overly concerned but ordered a urine cath anyway to check for infection. For the second time in as many months, Audrina's urine showed a large quanity of protein in it - indicative that possible her kidneys are not functioning as well as they should be. Instead of doing anything about it, they tell us to follow up with our normal ped in a week.

The rest of the week she continued to act like herself and never got any sicker, but still the lack of urine continued. We were a little nervous that no one seemed to care about finding the source of the protein, but as long as she continued to be stable we weren't going to push the issue.

Friday night, her belly blew up pretty big and we knew we needed to do an irrigation. She was able to get cleaned out and it seemed to make her much more comfortable. We got her ready for bed a few hours later and I picked her up - she was clammy and drenched in sweat. I took her temperature and she was 94.2. I immediately did a rectal temp and yelled for Adam to get her blankets and a warmer sleeper - rectal temp was only 96.1. She didn't feel cold at all but her color was not good, she was looking gray and pale. Her pulse ox showed some major dysregulation of her heart rate, it was all over the place, dropping 10 or more beats per second and then climbing again in this strange pattern. Her heart rate was well under 100 wide awake and kicking around, a far cry from her standard 150+.  Her oxygen began to rise and fall in a similar fashion.

We were ready to take her to the ER but wanted to make sure we warmed her up quickly first to stablize her for the ride. By the time that was done she was acting totally fine and had pinked up so we decided to wait til morning. By morning, she was looking fabulous and acting like herself, all smiling and alert and perfect... which isn't unusal for her because there isn't any particular thing causing the crash, it's simply her body's way of prioritizing what it can control - in this case, its her trying to deal with the kidney issue so some of the other things get less attention.


  1. Oh my goodness.I hope you guys get things figured out for her soon.I will wait for the second update.

  2. We continue to lift you and your family in our prayers and hope that docs can find out exact cause and bring solutions.