Out of Surgery

Evening everyone, momma here. Sorry I’m just updating now.

Surgery went a little longer than we anticipated but our girl is doing okay this evening 😊 spirit wise she’s smiling and awake.

Her dad surprised us with a hospital visit while she was in surgery and it helped calm her and make her smile big time when she woke up.

Of course it was a big pick me up for me as well ☺ really needed that 💜

Surgery went longer due to the surgeons running into something we didn’t expect to find.

They opened Ceci’s chest to begin the port removal and was greeted by a massive pocket of infection. A cavity formed behind and around sis’s port and was highly infected.

They had to remove the port and perform a clean out to remove all the pus and blood.

We did not expect to find something like this but it explains how in the world sissy got sepsis and this awful blood infection.

It caused damage to her chest skin so the surgeon said they had to cut out a part of the area and make a new scar line.

With us finding this massive infection in her chest there’s so many bad things that can happen or have happened but we’re not even going to talk about them.

We’re trying to stay as positive as possible! God is on our side 🙌

Now that the port is out we’re hoping the iv antibiotics will begin helping and cure this blood stream infection that is causing so many problems.

At this point the anesthesia team was able to place a deep peripheral line in her fore arm to allow them to continue giving Ceci fluids and medications. But we know it won’t last 😔 and the team knows too. The experts said they had a very hard time getting access.

So Monday they have scheduled for Ceci to head back into the operating room to have a PIC line placed. They did not want to do it today due to severity of the infection.

Please pray for a good weekend for sis.

Heading to Surgery

Our girl is heading to surgery.

Many prayers please.

Ceci is having some heart PVC’s on top of all this mess.

Will update again when I get a chance 💌

Lots of love and hugs,
Alexis, Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

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Heading into Surgery

Our sweet girl is heading into surgery in the next couple hours 😔

She’s still testing positive for blood poisoning even after 4 days of strong around the clock IV antibiotics.

Yesterday was a hard day.

We went from having a good morning to her vitals rising again and Ceci not having an appetite.

They are controlling her fever and pain with the highest doses of Ibuprofen and Tylenol possible for her and she’s getting it on a timed schedule.

They tried to stop a dose to see what would happen and poor girls heart rate shot back up to 150’s and her fever went back up.

After extensive conversations with Infectious Disease and her other teams they believe that Ceci’s bloodstream infection is clinging to something in her body.

☹ This is very scary because as most of you know sis has allot of foreign bodies in her.

She has her VP shunt in her brain, her mediport in her chest, rods in her left femur, plates in her right hip, plates in her left ankle and a ton of screws and plates in her entire spine.

Today we have to start from the beginning. They are going to remove her mediport from her chest wall and the Line team is coming in to see where else they can get access. It’s going to be difficult.

Ceci has her port because she can’t hold an iv or arterial line. Due to her extensive history of multiple surgeries and too many hospital stays our girls veins are not stable.

If all else fails they will be placing a PIC line. She absolutely needs a source of access so we can continue to give her IV antibiotics, fluids and the medications she needs.

The line has to come out because there’s real concern she’s at risk for Endocarditis or a lung cavity infection.

Pray hard with us friends!

That the surgeons hands are guided by God today, that we can control Ceci’s pain afterwards, that the Line team will be able to place new intravenous access for her, and that she will start getting better after they remove her port.

Be back soon 🙏🙏🙏


Tomorrow’s A New Day

Heading to bed….

Today was an emotional roller coaster ride. But we’ll worry about that tomorrow.

Let’s focus on some good before I have to share some bad.

Some very kind ladies sent Ceci a special surprise today and we have to say thank you for brightening her day!

Thank you so much to her Cheer Squad Sisters from Rock Island High School.

It was such a sweet surprise and helped Cec get through the bad today 😊

Thank you ladies 💛❤💛❤