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 🙏🙏🙏

🤍

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 😊

Good morning dear friends,  Mom here. 

Thank you for continuing to push up prayers to heaven for Ceci. Our almighty and his angels are looking after our girl 😊

I’m so happy to say that Ceci’s physical outer appearance is very much better! Her color has returned and she’s awake and smiling again. 

Although we received bad news on her continuing blood culture results, this is something to give us Hope. And that’s something we needed. 

Her 3rd set of blood cultures are still reporting high amounts of blood poisoning. So her teams are working hard to do everything in their power to get our girl healthy again. 

We are hoping we will have susceptibilty reports back by this afternoon, so we know for certain that we are using the correct combination of iv antibiotics to rid her body of this bacteremia.

We are praying hard that is isn’t MRSA.

Her labs reported some other issues with her blood work.  Her CRP continues to rise,  her magnesium is low and her phosphates are also low. 

So the teams are watching her closely and are going to give her some fluids to get these levels back where they need to be. 

Urology and Nephrogy have joined the team along with Infections Disease, Pediatrics and wound care. 

For now we continue to wait. 

If her blood cultures continue to grow bacteria in the next day or two,  we’ve been told sis may be heading into surgery to have her Port removed and a PIC line placed. 

There’s concern of course that the bacteria may be colonized on her port and the antibiotics will not help until its out. We really hope that’s not the case. 

This port was replaced in August and it’s been working so well.

Doctor is here so I have to run.

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

~Spina Bifida Fighters and Survivor ~

Support to help with Ceci’s Medical costs that aren’t covered by insurance,  and expenses related to mommas hospital stay-

https://venmo.com/Alexis-Leihsing
Verification code- 5931

Evening everyone, thank you for coming back by to check on Cec.

Our girl slept most of the day away today but I’m happy to say she’s sitting up with the head of the bed- watching Glee and eating some food 🙂 right now.

Around 3:30 we had to wake her up and see if we could get her BP up and because they ordered an ultrasound on her kidneys.

She was exhausted but did just fine through the test. Due to the decrease in her urine output there was concern that she may have swelling in her ureters or another stone causing a blockage.

Happy to report that her kidneys look good along with the pathways. She does have a kidney stone on the left side but it’s in a good position and isn’t causing any issues. So for now they are watching it.

Now on to some harder news 😟

Ceci’s 2nd set of blood cultures are growing bacterial infection again. This is after 3 rounds of iv antibiotics. Her CRP levels are also rising.

They are drawing blood cultures everyday so by tomorrow we should have the next set of results from this morning and we’ll just keep going daily until we get a negative.

If we continue to see positives, infectious disease will re-evaluate our course of treatment for sis.

Fingers crossed tomorrow brings good news.

Thank you to everyone that has shown such support during this difficult time 💞

Thank you to angels- Cathy B., Tina & Dino, Gina M., and Nina P. for giving to help our family during Ceci’s hospital stay.

Be back soon.

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

~Spina Bifida Fighters and Survivor ~

Support to help with Ceci’s Medical costs that aren’t covered by insurance, and expenses related to mommas hospital stay-

https://venmo.com/Alexis-Leihsing
Verification code- 5931

TeamCeciStrong

FAITHOVERFEAR

It’s 1pm here in Iowa City, Iowa and Our girl is still fast asleep.

This infection is really taking it out of her 😔

She continues to get around the clock iv antibiotics in hopes that we can beat this, and get our sweet girl back to being healthy and happy.

She hasn’t eaten much the past few days, her heart rate and blood pressure is low and her urine output is decreasing.

To say we’re worried is a understatement……

We’re going to wake her shortly to help get her cleaned up and hopefully figure out some things.

It was a very long night with concern and me standing at the monitors watching closely.

I’ve been in close contact with her dad and all the kids back home. It’s so hard because they can’t be here right now, I can’t leave her side and dad is struggling to stay at work because his heart is hurting with worry about our baby girl.

Waiting is the hardest part.

We’re waiting to see if the antibiotics will help… we’re waiting on the next set of blood cultures to come back… we’re waiting for the next set of pain medications to keep her comfortable…. we’re just waiting!

I know we have a huge and amazing team of prayer warriors and good thought angels by our side and we can’t say thank you enough for that ❤

I’m sorry that I can’t respond to each and everyone of your messages, emails and phone calls but please know we’re reading them all and holding your words close to our hearts.

Continue to pray with us for healing for sissy girl.

Lots of love, hugs and appreciation,

Alexis, Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

To help with Ceci’s hospital costs not covered by insurance, medical expenses and expenses related to our stay-

https://venmo.com/Alexis-Leihsing

🎗Thank you for support 🎗

TeamCeciStrong

FaithOverFear

Hi guys, Mom here.

It has been a rough night for our girl. She’s been in so much pain all night and this morning that we only got 2 hours of sleep.

Her entire body is hurting. And I can’t comfort her 🥺 Just touching her skin causes her to cry out in pain.

They have been hitting her with wide spectrum antibiotics since we were at our ER.

We’re currently at University of Iowa Children’s Hospital.

She’s been getting heavy antibiotics- Ampicilin, Rocephin and Zosyn by iv.

Ceci is septic and we just found out a few minutes ago that…..

she has a horrible blood stream infection. She’s positive for gram negative bacteria.

This is very scary but explains why she got sick so fast and so severe.

We finally have her fever and pain at a controlled level with around the clock Tylenol, ibuprofen and Atarax.

As of now Ceci girl is stable vital wise, but she’s not out of the water 😭

The next 2 days will be critical and will tell infectious disease and the team what to do next.

Please, please pray hard with us that she gets better soon.

And that we can continue to control her pain and she can rest.

She was so sick yesterday and this morning my heart hurts so bad. We have been so worried about our girl.

They just came and drew another round of blood cultures off her port and are running them to see if the antibiotics are helping. We should know more tomorrow.

Thank you so very much for following with us on this and praying so hard for Ceci.

And thank you to everyone that sent me Birthday wishes and love yesterday.

🥴 I kept forgetting it was my birthday because I was so worried about sis. But I appreciate the love guys 💜

Be back soon

Lots of love, hugs and appreciation to you all

Alexis, Cecilia Marie and Our Special Family

~ Spina Bifida Fighters and Survivor ~

TeamCeciStrong

FaithOverFear

CecisCourageCrew