Ceci is Out of Surgery and Back to Her Room

Ceci is out of surgery and is doing good.

She’s awake and asked for food 😊

With how much of a struggle it’s been to get her to eat, this makes all of us on the floor very happy!

She wanted some Subway, but of course it was closed so she settled for a cheese burger from the cafeteria. 😌 The hospital has a Subway in the building, so it being her favorite it’s always her first choice here.

On to some bad news. We still do not know how extensive this infection is.

Her orthopedic surgeon came to speak with me after her surgery and we still do not know how deep this infection is or if she has a CSF leak or infection.

We won’t know if there’s a small leak of csf, until she becomes symptomatic.

He said he had to go pretty deep into her back tissues because there was deep tissue death.

He also said when they took off the wound vac that was on her back from yesterday, he realized his PA did not place it correctly. So she had a pool of clear fluid in her surgery site.

He said he was concerned that it was indeed cerebral spinal fluid, but when he drained it off her back it didn’t pool again over a few moments.

He sent the fluid and tissues off to the lab and packed her back and recovered it with a new wound vac.

Since she came back from surgery it’s been working hard to drain all the infection and fluid off and we have around 300 MLS in the canister already.

Since she’s already growing E-Coli from her preliminary wound culture they are giving her IV Rocephin and Clindamycin but again we’re waiting on the final results. There’s some concern that MRSA may grow because we’re showing another growth but we won’t know what comes of it until tomorrow.

Honestly this is the hardest part….☹ now it’s a waiting game.

Her orthopedic doctor said Thursday they are going to remove the wound vac to see how her back is progressing. And then we’ll reaccess the situation and see if plastic surgery will need to do surgery.

The next few days will tell us how bad this is.

They will be drawing blood counts, treating her with the heavy iv antibiotics and fluids, waiting on these new tissue and fluid culture results, repeating her ekg, and watching her vitals.

We’re staying hopeful that is will get better with the antibiotics and they’ll be able to get her back under control without plastic surgery.

Your love, prayers and good thoughts are helping Ceci and our family through this.

Thank you for fighting beside us and sharing her story.

The more Good Thought Angels and Prayer Warriors the better 🙏

Ceci has started complaining of a headache, so I’m going to go.

Prayers for a good night’s sleep and an uneventful night for Ceci and our Care Team.

I’ll update again soon.

Lots of love and appreciation,

Alexis, Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

Thank you for being part of:

Ceci’s Courage Crew 🥰



We just got Cecilia’s preliminary results from her wound culture, and it’s bad 😥

Ceci’s fighting an E-Coli infection in her surgical site. To make it worse it’s not final yet so it may be much worse or have another bacteria growth.

She’ll be heading to surgery at 530ish tonight.

Our girl is so sick…..

Friendship Bracelets

Good afternoon everyone.

Ceci’s hanging strong.

She’s continuing to get around the clock antibiotics and some time later today they’ll be taking her back into the Operating Room to debrid the tissues in her back that are starting to die.

She’ll have an incision and drainage and they’ll also explore the site to find out how deep her infection is.

She’s on some heavy iv pain medications at this time so she slept most of yesterday away and this morning.

Her pain is very well controlled at this time and she’s awake working on Friendship Bracelets for her wonderful nursing staff here at Children’s Hospital of Illinois.

She didn’t eat or drink very much yesterday, but that’s expected with how crumby she’s feeling. And she’s NPO today to prepare for surgery.

I’m hopeful that tonight she’ll be able to eat and hopefully she will. It’s been a battle getting her appetite back since this all began.

Ceci’s surgical site- wound culture, is continuing to grow 😥 so we do not have results yet. Hopefully those will be finalized tonight so we know what bacteria she’s fighting and if we need to change or add iv antibiotics to her care.

🙏🙏🙏 prayer warriors please continue to pray for our fighter. And good thought Angel’s, please continue sending good vibes up and out for sis.

I’ll let you all know when she’s heading into surgery.

Lots of love and hugs,

Alexis (momma), Cecilia Marie and our special family 💜

~Spina Bifida Fighters and Survivor ~