Sunny Days

     At one point, I had said to one of the team members that I felt like our window of going home before surgery must be closing. She asked if we had been given a date for surgery, and I said nothing except for the "8-12 months" guess timation when Sunny was a little baby. And that's right where we are, so if the window is  closing, should we just switch gears and face that reality instead of continuing to try to go home. As Sunny wasn't showing any real signs of needing the surgery presently, nobody really knew what to tell us. They decided to get some updated information and discuss it with the surgeon.  So Monday morning, she was taken to get a CT scan and then our favorite heart catheterization doctor took Sunny back to measure various parameters to assess heart & lung function. During that procedure, they were able to see some contrast in her stomach that was leftover from last week. Thursday, Sunny was given some contrast via her G-Tube and then was p...

       Last weekend after the trach education things, my sister and I watched Groundhog Day because neither of us had seen it in a while. It felt appropriate as I was thinking about this week and what updates to include in the blog, it just started feeling very...similarrrrr to last week. And this whole summer really:/ Lot's of puke, lots of confusion, and still trying to figure out how to help Sunny feel better.     Last weekend  should have been her pukey weekend - because the trend had  been for it to happen every two weeks. However, these last two weeks it has been weekly, with less of a recovery in between. It's weird that it keeps happening to begin with, but now it's weird that it's just speeding up in reoccurrence.   Puking, accompanied by all the usual suspects - higher temperature, loose stools, excess stomach bile, and tests that show no clear reason why. At this point, the team knows this song and dance of Sunny's, but t...

  Trending with our continued confusion, Sunny's "pukey weekend" came a week early. Monday, she couldn't keep anything down and even after we emptied her stomach via g-tube, she was repeatedly woken by her nausea for most of the day. It was miserable. Physically & emotionally exhausting to watch her be so uncomfortable without anyway to truly help. I called for backup pretty quickly into the morning, and Chris was fast to finish up things at work and return back to us.  She's been having these spells of nausea roughly every 2-3 weeks, and this last time we attempted feeding her a simple, broken down, hypoallergenic formula to see if that helped. She was on a measly dose of 4mL/hour through her g-tube in addition to her IV nutrition, so when Monday turned out the way that it did, it just brought on more questions.  It seemed odd that it would happen again so soon even though she was on the smallest amount of food she's been on in a long time. Yet again, the...

  Friday last week, Sunny spent some time with her cousins! She was mostly allowing them to watch her sleep as she lay peacefully with her arm famously covering her eyes.  Saturday, we we hopeful that she'd be more awake and interactive, but were met with the nurse telling us that she was puking again. She had started at some point after midnight, and continued on into morning. We have learned to just quickly switch to IV fluids, and not bother with testing if she'd keep electrolytes down. Thankfully, the doctor and nurse practitioner that were on over the weekend had also been on the last time Sunny was like this. They were able to really experience the pattern and see all the tests come back inconclusive. Additional tests were ordered and more doctors brought in for consult - a few gastroenterologists, some peeps from general surgery. I was grateful that the team was seeing that it was a pretty rhythmic pattern, and were trying to narrow down WHAT could be causing these issu...