Complications…again

❤ Team Naiyana Update ❤

It’s been a bit of a whirlwind since our last update but we will attempt to play a bit of catch up as our focus has been on transitioning and supporting our family into our new normal…so here goes nothing prayer warriors!

Update:

Got word that Naiyana, after her second admission in 6 days due to O2 stats being in the 60s being taken to Cath Lab emergently…It was after CATH Lab we discovered that she only had 1.5 mm of blood flow to her brain and heart…The doctors gave her only a week or less to live, or in other words before that shunt kinked off and she experienced what is called a “sudden death event.” It was a HEAVY blow but we clung to our faith, each other and OUR GOD…

We prayed about it and talked with her surgeons and doctors. The Cardiology Team at Children’s is PHENOMENAL with special nods to Dr. Pei-Ni Jone, Alison Dumond, CPNP and Dr. Jeff Jaggers…

Nevertheless, it was decided that the only two options we had to give her a shot at life would be a stent into the two areas of her shunt that had kinked off at the head and foot or do her Glenn operation…Ultimately we had no choice but to do her 2nd stage surgery 4 months early because the danger of putting a stent on the artery that goes to the brain that would likely break off causing her to stroke out and die or have to be “fished out” at a later surgery anyways just wasn’t optimal…

So, we agreed to the Glenn knowing that our likelihood of having a positive outcome were very limited in our estimation because of her size…though her cardiologist is ever the optimist! They went in and wound up having to do two additional surgical repairs ON TOP of her Glenn which was hard but we were grateful for nonetheless that these procedures existed to spare her life…

Yet…she came out of surgery on life support and from the bypass machine…

Days went by with the schedule described above and last Friday we received another blow that Naiyana was being taken back to Cath lab and bumped to first case because they had discovered her open heart surgery was unsuccessful as we had met all our goals for her diuresis and still no improvement in oxygenation…

As they wheeled out our beautiful warrior we were told that Naiyana was VERY FRAGILE and no promises could be made…It’s one thing to look at your daughter and know it and know that’s what all the doctors know but to HEAR it shatters confidences and sears the heart…So we pulled the kids from school so they could come “kiss their sister and give her all their love” I’m sure you know what that means…

My best friend later cheered me up letting me know all fragile meant was that she was “fine china” and I took that to mean she was extra special and to be treated with the utmost care and for the most special of special occasions only. 11 weeks old and already a STRONG Warrior Princess…fine china shall not be underestimated!

I think her super hero shall be Ng Mui Warrior Princess!

I later told the doctors about our little analogy and we all know what we are getting her for her 1st birthday! A warrior princess china tea set!!!

***

Okay so now back to our normal broadcast…

Naiyana came out of Cath, thank God, but wound up having to have the stent we desperately tried to avoid anyways just in a different location which to our benefit the doctors explained is in a safer location than the innominant artery off the aorta.

Then, sadly, in the following few days we’ve had road block after road block of complications…

-Her right lung collapsed.
-We lost her pulse in her leg,undetectable even by doppler, due to a blood clot and risked losing her leg.(However our Pastor came and after he was done…They got a pedal pulse!!!Go Jesus Go!)
-Then she developed a massive clot where her ART line was.
– And just yesterday we discovered she had two pressure sores on her bottom though the verdict is still out on whether it is technically a “pressure sore” or an “excoriation.”

I met with a patient advocate for Naya and then the floor’s social worker to get plugged in with a child life specialist for the siblings and the resident Chaplin is a regular in our room 🙂 Plus our church family supports us as the rock stars they areas our Mission is Love, God, Love, People, Impact the World: Southeast Christian Church starts with you where you are! www.sechristian.org

So now as it stands, our princess is being weaned off Nitric Oxide and Sedation in hopes that her right lung that is collapsed will “pop back open” with aggressive CPT and she is still on a ventilator (intubated) which is a machine that breathes for her…

We are in need of some financial assistance as of late because my husband had to quit his job because his FMLA ran out and he had to give his 2 weeks or he would have to be fired and thus no way to be rehired when all this sorts itself out…We are trying to think long term benefits for our children, our family and we simply could not place a price on time with our daughter and we believe it was the right thing to do.

Prayer warriors, family and friends…Could you please consider sharing her page or doing a fundraiser for her?

All God’s Blessings to You and Yours <><

Love,
Team Naiyana

https://www.youtube.com/watch?v=bfveawSAHJA

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