The Nunez Family

UPDATE | 8.15.23 | From Sophia

The surgeon just came and spoke with me.

Surgery was much longer than planned. When they got into Maggie’s brain, deeper and farther than they’d been before, the surgeon was surprised by just how much scarring he found in her brain. Scarring from her meningitis as an infant. They had to try four different routes to get to her third ventricle, lots of in and out, scoping out the best way through, all while being so careful to not harm her delicate brain. He said it was very tough, they almost had to abort. BUT - they found a way through! He successfully opened the membrane between the third and fourth ventricles!

We will leave her temporary drain in place for the next few days just in case her brain tries to close up that spot they just opened.

He moved the drain just a bit further down so that we aren’t using the same hole over and over again. It needs to be watertight, and it was getting a bit loose.

Recovery may be slower. The surgeon did verify that all her limbs are moving before he came to talk to me. I will go see her shortly in recovery.

We will likely do a CT scan tomorrow to see if fluid is flowing through the hole he just made.

If all goes well, we will remove her temporary drain and get moved from PICU to the regular children’s ward until Monday the 21st when we will go home - if the infection continues to be treated well."

Please be praying specifically for Maggie's pain to be managed quickly and easily.

As a reminder, please refrain from reaching out directly to Tony and Sophia.

-Evie

Hello everyone, my name is Evie. I'm Sophia's Sister. Many of you have asked for a GoFundMe to help support Tony and Sophia and the family as they support Maggie through her hospital stay.

Recently, Tony and Sophia noticed that the skin around Maggie's shunt (On top of her head) looked sore, swollen, and irritated. Then more signs pointed toward infection. After lots of tests and images etc... It was determined that Maggie did, in fact, have a bacterial infection in her shunt.

On Monday, August 7th, Maggie was hospitalized to have her entire shunt removed. From her head all the way down to her belly.

She then had an external drain put in so that her CSF could continue to drain out of her head.

The plan from that point was to treat the infection and then place a new shunt once the infection is clear.

Maggie had a lot of really hard times recovering from surgery and adjusting to having an external drain.

Over the next couple of days, she struggled being away from her home, her family, and her dog Millie and was inconsolable a lot of the time.

Wednesday night, her external drain got clogged with a blood clot and her brain began to swell. By morning, she was in extreme pain from the swelling and was vomiting and having vision issues.

This was very concerning. After a fast CT scan, it was determined that Maggie's external drain had failed and her brain was filled with CSF.

This triggered an emergency surgery to remove the drain from her head and replace it with a new one. This was a big setback and restarted the recovery clock. To say this was a gut punch to Tony and Sophia would be an understatement.

As I write this (Saturday, August 12th) there are still vision issues, and Maggie is not eating well at all. They are all trying their hardest to get her to eat in order to avoid a feeding tube being placed.

Many other things have happened, and many more moving parts are involved in this whole story that I simply don't have enough details on to adequately describe in this little blurb.

While everyone is doing their best to remain strong, these are some hard and scary times they are facing.

The Lord is their strength and they are fully leaning on Him to sustain them.

We are all praying for a miracle over this sweet spunky girl.

There is a lot of back-and-forth driving for Tony and Sophia and we all know the price of gas right now. There is also a lot of expense that goes into keeping the other four children entertained and distracted in this horrific time. As I mentioned, many of you have asked if you can donate financially. So here is that place.

Lastly, I will ask that we refrain from reaching out to Tony and Sophia directly. They have been bombarded with check-ins and well-wishes, which are so kind and thoughtful. But they are tired and weary. And every time they have to explain what is happening, it just wears them down that much more.

I will try to update this page as often as possible.

Thank you to each and every one of you for your relentless prayers.

Keep them coming, we're waiting on a miracle.

UPDATE 8/13 From Sophia:

Maggie had a good day today! Eating more, went on two walks, we washed and brushed a lot of her hair, and her vision is improved more than yesterday. Not back to normal - but getting closer.

This morning she was taken back for a CT scan with contrast to decide the best placement for her upcoming shunt surgery.

The surgeon had a theory that Maggie might be a candidate for an alternative treatment to her hydrocephalus called “Third Ventriculostomy”.

Essentially, this procedure would remove the need for a VP shunt by boring a small hole through the membrane that separates the third and fourth ventricles of the brain - allowing CSF to flow freely down the spinal column as it’s meant to, in a slightly modified way.

The doctor did find the exact spot in Maggie’s ventricles that was scarred over due to her bacterial meningitis as an infant. Opening up that exact location is not an option - BUT he does have a location he could open and allow a more natural circulation and drainage of CSF - eliminating the need for a shunt.

The procedure has some higher risks, and also many higher benefits - especially in the long run. A shunt free life for Maggie!

It does *not* cure hydrocephalus- and a revision of the procedure is a possible outcome down the road, and even a placement of a future shunt if her brain doesn’t respond well to the procedure.

The team do all believe Maggie is a great candidate for the surgery.

Tony and I need to decide by Monday morning if we will go with this procedure, or the original plan of simply replacing her shunt. Though, not really replacing - since it would be placed in a brand new location. The other side of her head. (Meaning a third opening/scar on her head) the alternative procedure would use her existing scar and hole already bored through her skull.

We are leaning toward proceeding with the Third Ventriculostomy and not the VP Shunt.

We are praying and will sleep on it.

There are many more details to factor in that we won’t bore you with here.

Suffice it to say, we have to choose the best brain surgery for our girl. It is not an easy call to make.

Regardless of what procedure we choose: surgery will take place this coming TUESDAY. We will likely be discharged Monday August 21st.

Still good news on the bacterial side of treatment. No growth. Docs are relatively sure we are effectively killing the bacteria. Will know definitely by Monday evening.

Please keep praying. We need wisdom and clarity from God.