Friday, February 12, 2016

Our Little Hero

The last few days have been an odd combination of quiet, busy, and stressful. Overall Avelyn has been a bit better but new problems keep trying to creep in and disrupt her stride. 
For instance she has spiked a fever and become restless and tachycardic at the same time of day for the last 5-6 days. It's weird. It has become so predictable that Sean and I brought up the pattern with the doctors in rounds and predicted it's occurrence yesterday. (We love the attending and fellow here this week. They really listen to our concerns and truly try to answer our questions. I feel a little bad that we usually try to make the most of their weeks here, so we ask them more questions than the other docs.) 
Also, I noticed another new symptom early Tursday morning. Avelyn's pupils weren't equal; the left was 2-3mm larger than the right. This can be a sign of serious brain damage, so I began to panic a bit-albeit inwardly. I called the nurse to see, she called the nurse practicioner who ordered a head ultrasound. The ultrasound came back unchanged. Meaning no new obvious stroke damage. The next morning it happened again, along side her usual fever and also accompanied by hypotension or a low blood pressure. 
This time our favorite attending and fellow were here. I asked the nurse to get one. They seemed confounded because she didn't seem to have active stroke symptoms, she was acting realitively normally for an intubated and sedated 2 month old anyway. They ordered blood cultures and a CT scan. Her temperature kept going up and she didn't settle as easily as she normally does. When they wheeled her down to the CT scan it made me so nervous. I can't stand her out of my sight. I know she is in very good hands but she's ill-critically ill. I know of too many babies who passed or had serious crashes around here. It was a long hour and a half. When the results came back clear a couple hours later an EEG was ordered. This was to see if the difference in her pupils could be attributed to seizure activity from her previous stroke or possibly new "mini-strokes" which could damaged areas too small to detect without an MRI. After 18 hours worth of live EEG feed with no seizure activity, despite multiple times episodes of her being awake with uneven pupils the neuro team signed off for now. Then optometrists were called in. They couldn't find any evidence of her infection traveling to her eyes or any obvious ocular damage in her left eye. So after all the tests and such findings suggest it could be a damaged nerve, sedative related, or nothing. We don't know and don't know when we'll find out. Good news is she isn't having seizures, hasn't had any other strokes detectable by ultrasound or CT scan, and her infection hasn't traveled to her eyes or brain.
So along with this unanswered question, we still don't know what her pathogen is. The cultures taken this week and all previous cultures remain negative. We still don't know why she is spiking a fever everyday at the same time or why she'll also get hypotensive during these episodes. She's a little medical mystery, which is unsettling. Oo and the pupillary difference is back today. :/
Other than all this, she is doing "better". She's maintaining her oxygen saturations a little better and isn't requiring as many PRN medications. So that's reassuring for her surgery this next week. It's still tentatively scheduled for Tuesday the 16th. 
The photos below include Avelyn's first bow, her EEG "super hero" get up, me holding her for the first and only time in weeks, and other photos where she just looked especially cute 😉


  1. Aww love the photos of my Lovie ❤️ She is such a cutie with those pouty lips and that crazy hair 😀 Can't wait to kiss those little fingers & toes 😘 Praying all stays somewhat calm and Bichell can work his magic on Tuesday. Father please Bless our precious girl & her parents. Also guide the Surgeons & staff that work so diligently to make our Avie well. We still beg for our miracle and ask that You remain close to hold on to us all. May we always give you all the Honor & Glory the name of your Son & Our Lord Jesus...Amen

  2. Somer please know I will be praying for Avie,You and Sean Tonight,While I sleep and wake during the night, And when I wake in the morning! And Baby Girl I'm praying right now! We Love be Y'all So Much!