Meh Week

 



    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 on your radar until they have to be. I didn't realize that there was a shortage of in-home nurses, which makes us all the more grateful for the two nurses we were able to meet with! They were both such kind humans, and were easy to talk with. We're needing to fill in some gaps before we go home, and are in the process of getting some family members trained to hopefully help fill those needs!
 It's for sure an intimidating thing, especially when you see Sunny and all her "accessories".  It was very unnerving before we completed our training, and it's still scary to think about being away from all the nurses, doctors and respiratory therapists. But I try to calm my brain by just looking at it simply and logically - we just have to keep her airway stable. We learned tools, tips and tricks to do so, and are equipped with that knowledge, AND we're not the first ones to take their trach/vent child home. 



Hopefully, we're able to sleuth out what's going on. I'm always amazed at how much the team includes us and asks our opinions. It's easy to just sit in her room and feel like they know what's best and I'm just there for decoration. But Chris is exceptional at speaking up and asking questions, and I'm slowly getting more brave about asking them things. They're always very welcoming of ideas, it's just so hard to balance letting them do their thing and being an overbearing parent;)
  She's pretty straightforward when something isn't right, she's just not very straightforward about what isn't right. Unfortunately. Girly-pop loves to keep us guessing; she's a mysterious ladyyy.


Prayer requests:

- Health for Sunny - for the team to be able to figure out what is going on & will know how to help. 

- Our search for an in-home angel human to help us take care of Sunny-Buns.


Thank you, 

Chris, Alyssa & Sunny





She was sleepy this week

Pooped through her first outfit, then fell asleep in the middle of the outfit change.

She cannot be bothered


Space buns hairdo - rocking out her 12mo onesie from Uncle Jordan

Poor sicky:(

Watching some fishes between puke sessions


Love her so.



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