"Do you ever have déjà vu?" "Didn't you just ask me that?"

 

    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 they still ran tests and sent cultures. While we don't think she's got any infection because these are her usual symptoms, she is currently more at risk for infection because of her PICC line.  

In addition to testing for any infection, we're experimenting with eliminating soy. Nobody in the team thinks that what Sunny has going on is a food intolerance because she really isn't showing a lot of the symptoms, and they're not daily. We figured at this point it's not going to hurt or "waste time", so why not?
Chris had been tossing around the idea of a food intolerance of some sort, and chatted about it with some people. Maybe Sunny isn't processing a little bit of something, and then after two weeks of her body not knowing what to do with it, she can't take anymore and pukes up anything else we try to give her.
I don't eat a lot of soy, but in my efforts to make digestion a tad more simple for Sunny, I was avoiding dairy and therefore came across more soy in my diet than usual. I think the hospital kitchen uses PAM cooking spray, which contains soy - so when she was getting breastmilk, a trace of it could've been in there. Also, the last two weeks of her vomiting weekly started when she was started on IV nutrition & lipids - which also contains mostly soy. So, it's there, it could be? It would honestly be amazing if this was it, and the fix would be simple. 
But other than it being everywhere and her puking, there's not much else that points to this as the issue. She doesn't have daily watery stools, rashes, or trouble growing, and I think that's why we're only now just trying it out. 

Our tentative discharge date has been put on pause until we can get a better handle on what's causing the ruckus in Sunny's innards.

They're still increasing some of her meds that aid with motility, and are discussing a G/J-tube as a potential next step. The the is also planning on checking the pressures in her heart early next week and redoing some imaging so that they can discuss her at the surgical conference and hopefully give us some sort of an estimate of when they'd ideally do heart surgery. 


Prayer requests:
- That we'd figure out how to help Sunny, OR that it be healed & it just stops. We don't need 
answers, we just want it gone.
- The tests and conversations regarding surgery timeline, for wisdom and clarity for the team & Sunny's parents. 
- For Chris & I. Today is nine months of being here, and we and MORE than willing to be here with Sunny & we're so grateful we've gotten all this time with her...it really is amazing. We're grateful and we're tired of spending our days in a hospital, eating hospital food, not being at our house, not going to our church and seeing our friends every Sunday, not being able to take vacations as a family, not being able to just be home. It's amazing how tiring it is to sit around in a hospital all day. We've made a lot of friends here - friends that we'll be sad to not see every day, and they genuinely just make being here much more joy-filled. But prayers for peace and endurance would be greatly appreciated. 


BUT THAT ALSO MEANS SUNNY IS NINNNNE MONTHS!!??!?!
That is truly wildddddd. To go from 5% chance of survival, to 9 months(and in the 95th percentile for length?!) 
It is hard, but she is SO worth it. That's not even a cute thing that I say to be cute. We really feel that our love for her outweighs the difficulty of living in a Ronald McDonald House/Hospital. She is so worth it, and we feel so incredibly blessed to get to kiss her squishy cheeks everyday

Thank you,

Chris, Alyssa & Sunny

A rare sighting of Sunny getting comfy on her tummy

She just looks so big.

Thursday morning PT session included a hair spa from Nurse Sarah

Sunny had puked on her hair, and Nurse Sarah(who refers to herself as Sunny's "Auntie Sarah"), shampooed it out with this heated and soapy shower cap. 

Sleeping under the stars:)

Her puke day ended in her stroller with her trusty fan keeping her cool

The IV team was needed to put a line in so they could give Sunny some blood on Tuesday because some of her blood tests showed she was a tad anemic(most likely because Sunny's been having a lot of labs run these last few weeks). She was very skilled and even though Sunny is hard to stick, she got it on the first try. She's worked with Sunny since birth, and that was her last day before retirement, so it was nice to be able to say goodbye!

Arm always cracking everyone up

Monday afternoon, Sunny got to take a trip to their Sensory Room!

She was enamored by the lights, and just sat in the little beanbag chair for 30 minutes
until we strolled back.