Sunny Days

  Sunny had a pretty good week... It started off a little rocky on Monday with some oddities in her stool(I'll spare you the details:), and then Tuesday she puked twice after her morning meds. THAT of course immediately caused me to spiral, thinking we were headed back to her not being able to hold anything down but not having any answers as to why. She didn't vomit again. Instead, her Tuesday pretty fun - the munchkin woke up around 11:00am and stayed awake for a good part of the day. She sat in her highchair, OT came and was followed closely by PT. She was happy in her highchair again after those workouts, and it wasn't until closer to 4:00pm that she made her way back to bed.  Surprisingly, that night she started getting fussy & nobody could really figure out why. She slept most of Wednesday, and when she wasn't sleeping she was mad. Thursday followed a similar suit and, after her helping Majo & Aunt Jadyn with trach education, she fell asleep again for most ...

  Last weekend,  Sunny was taken off of feeds again & put on IV fluids because of her nausea & vomiting.  They had tried giving her some electrolytes, but she puked those & her meds too, so IV it was. The team was quick to retest her urine because that's what they found last time(almost 2 weeks exactly from her first day of puke last week). That test, her respiratory panel, and all the blood tests all came back unalarming.  She got an xray, echo,  and ultrasound, none giving any clear indication as to what could be causing it.   No meds had changed, her feeds were increased from over 90 minutes to 60 - which she tolerated Tuesday & Wednesday before. Sunny also had a low grade fever off and on over the weekend, & that was especially confusing as she was never febrile when she had Covid or Necrotizing Enterocolitis. We've all been tossing around ideas, asking questions....she's been tolerating the g-tube "feeds" of electrolytes thus f...

       Sunny had a pretty good week, but she's still not seemed her normal self since her UTI endeavor. We're close, but some days she looks completely back to normal, and then she'll have a day or so where her heart rate is elevated, or irritable, or just off. Yesterday, she started puking up everything in her stomach. We tried slowing down her feeds, switching to electrolytes, giving her IV fluids and only her meds via g-tube - but she continued to throw everything up. Once again, we've run a bunch of tests and nothing is cluing us in to what could be the culprit. She's currently sleeping fairly comfortably, thank Jesus. The doctors have yet to round on her today, so it'll interesting to see what plan they come up with for today. Not knowing how to help her sweet little self hurts so much, and I wish so much that SOMEthing could be simple for this sweetie-pie. We're still on the hunt for some in-home nurses. It's amazing the things that aren't even...

  Last week left off on a weird note - she had been doing good and boring like we like it, but then took a turn for less boring.  Sunny was puking up a good bit of what was in her stomach, so they eased off of milk and tried an electrolyte fluid. She did okay with that for most of Friday day, but Friday night she couldn't keep anything down. After she got all the contents of her stomach out, she was able to sleep. They started her on IV fluids, and began to brainstorm. While she felt warm to my touch, she was still reading at normal temperatures. She had a higher resting heart rate and was needing more frequent suctions, but all the tests they ran had been coming back normal(or at least normal for Sunny:). Eventually, they decided to culture her trach contents, and urine. Those came back with an uninvited bacteria, so they began antibiotics.  She quickly began to slowly improve every day, so they slowly began to reintroduce the electrolytes & then milk again! She's st...