Week From Hello G-Tube

 


Sunny continues to follow her "you think that's 
what I'm gonna do? HAHAHAHAHAHAHAHA" brand. She lives her life how
she sees fit, and it's not often what everyone around her expects, or wants usually. 

Following her g-tube procedure Friday, Sunny recovered & spent the night with her friends in the CICU. Then, Saturday afternoon, she made her way back over to 2B to continue healing. Things looked normal, and she spent some quality time with her Papa as I journeyed to join my family for my Dads birthday dinner.

Sunday, Chris walked in to see a big-bellied Sunny. The nurse said Sunny had a puke-y night, and her heart & respiratory rates were resting higher than her norm. She didn't seem agitated, just bloated and not herself. The team took some x-rays, which showed air in a couple of places. There was some loose in her abdomen, which apparently is normal after a procedure; your body usually absorbs it and gets it out. But then there was air in the lining of her bowels - and THAT one was concerning. Eventually, one of her caregivers hit a button on the wall that set out an alert, causing lots of people to flood the room. Doctors and nurses from both 2B & the CICU came in to assess her and the situation.
The suspected culprit, if not tended to quickly enough, could lead to her needing sections of her intestines taken out. The decision to move her to the CICU to continue her care was promptly made, and they hurried her out. 

The surgeon that did her g-tube Friday was "on call" on Sunday, and ended up taking her back to vent some of the air, make sure the g-tube was still in place, and verify that there wasn't a leak anywhere. 

They stopped her feeds and started nutrition & all medications through IV form, giving her bowels a break for at least a week.  Sunny had NOT been a fan. 

Despite her body getting nutrition, Sunny is used to having a full belly & is probably feeling very hangry. Additionally, change of medications to make them IV capable, has been rather bumpy. She had a restless day with bad reflux on Monday. Within 10 hours, she'd only slept 1.5 hours because of discomfort & gagging. We're learning that there isn't an IV version of everything, so they're still trying figure out med replacements and doses. 

The rest of the week followed suit. She just seems uncomfortable, and she has every right to be.  I'm sure she's still sore from G-tube things, she feels hungry, her gut probably still feels off from the infection, and she had gone cold turkey off of her calming medication(which we heard can be really rough). 

It's sad to see her sad and uncomfortable, and non of the usual tricks are helping. Historically, she loves being held,  and likes her bum patted, hair pet & looking at her disco ball.  But no, this week she only likes holding hands & occasionally glancing at Finding Nemo.


This week has been tiring.  I think once we hit month four, we started really feeling it. But then getting sent back to the CICU when getting the G-tube was supposed to be our last to-do before gearing up to go home,  was hard. And then spending our days seeing her uncomfy & not be able to help - also very hard & draining.  


But Sunny is so strong. She's gone through so much. We're so proud of her, and we're proud & grateful to be her parents. 


Prayer requests:

- Sunny would heal fully from her infection and G-tube surgery. 

- Sunny's parents to be strong & patient.  


Thank you for your prayers, gifts, letters, and encouragement! We're so appreciative, and would be in far worse shape without you♥️



We gave her a last bath for a while because of g-tube healing time. 

Cute, waiting in her hospital gown & still trying to pull out her feeding tube. 


Free face!!!!

Meeting Great Uncle David

& Great Aunt Joni


Hangry, trying to eat some fingies

The last time we were in this room, was right after she was born. There were still fall leaves on the trees.

Hand jail again, but this time for nose scritches. 

Serenaded by the volunteers

The photo you should picture when you say "she's a fighter" 😂

Finally asleep. Looking huge in her high-chair. 






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