Sunny Should Get a Cath Lab Punch Card

 

Last Friday, our doctors sat us down to discuss Sunny's heart function.

 Since the middle of February, they had been keeping an eye on it because of some decreased in function. We moved back into the CICU to start her on a drug that they hoped would improve the squeeze & relaxation of her heart.  After about five days on the IV medication, Sunny had an Echocardiogram to check if it had helped.  It hadn't. The dosage was increased on Monday of last week, and an Echo was ordered for that following Wednesday. 

Because there was still no improvement of function, the team discussed Sunny again during the Thursday surgical conference. 

On Friday, it was expressed to us that because her heart was not responding, it was not likely she'd recover from a heart surgery.  Since her heart wasn't improving on the medication, they thought it likely that it was ultimately her Trisomy diagnosis that was affecting the muscle as a whole, and not something as tweakable. 

They gave us three options. None of them were glowing or too hopeful.  The first was to do nothing and just try to get her to a place where we'd be able to take her home on hospice.  Second, we try a less-invasive procedure to attempt regulating the blood flow to her lungs.  The stent was funneling a more than normal amount to her lungs, potentially causing added stress on her heart. Lastly, we could try to find another surgeon who'd be willing to risk surgery on her heart in the condition that it was in.  

Our cardiologist asked the team to try one other medication. While we mulled over our presented options, they administered that new IV medication & ordered an Echo for a few hours later. 

During the echo, the physician on duty for the week popped his head in and said,  "that already looks better".

It was working! We didn't know what that meant in the bigger picture, but we'll take it.

It had improved the squeeze, but not the relaxation. But it was enough to give hope that it wasn't just her Trisomy affecting the muscle, that maybe her heart COULD improve.  

We decided to try the flow restricter - something placed in the stent to lessen the amount of blood getting sent to her lungs.  While the exact procedure has been done, it had not been done at our hospital yet.  But after talking about it with the doctor who had done Sunny's other catheterizations, we felt comfortable trusting her & believed it would help Sunny's heart.  

The procedure went swimmingly! The doctor was very pleased with the procedure & all Sunny's numbers improved immediately,  & continued to shine as the week progressed. Plus, with being the first to have this procedure done at our hospital, Sunny was the talk of the town - just like she likes it;) Nurses in 2B, who have been asking about her since we left, called her a "pioneer".

Everyone's been happy with the increase in function of her heart,  and have been decreasing her IV medication. 

Another echo is scheduled for Monday, they'll discuss her this Thursday at conference again. If everything is still looking good, the hope is to get surgery on the books.  

Oh! Sunny's parents wrapped up our trach education this week!!!! We still have a few things to do that can only be done when we're closer to going home and are in 2B.  But we now know EVERYTHING.......ish;)

Prayer Requests:

- Sunny's heart function to remain stable

- Health in general so nothing gets in the way of scheduling surgery.

Thank you♥️ 

This season is so hard & exhausting, but we'd do it again in a heartbeat for this spicy munchkin. She's incredible, so strong, & so loved. We are grateful.  

Love, 

Chris, Alyssa, & Sunny Good

Sunny's papa wakes up early to go to work early, so that he can leave early & be on time for trach education followed by Sunny snuggles🫶🏻

Also - TODAY IS HIS BIRTHDAYYYY!🎉🎉🎉

The most perfect babydoll

Visits with Uncle Wes, Aunt Steph, Majo, Pap

& held by Aunt J for the first time!

Not a morning girly - a series: