Faith over Fear Always

Good evening dearest friends and thank you for coming back by to check up on our girl.

Ceci is feeling much better today 🙂

She is eating and drinking well again, her temp is completely back to her normal, and her bp is back down to baseline.

We are still dealing with increased episodes of tachycardia, but sis is battling some nasty bugs inside of her body, so honestly that is to be expected. It is usually an indicator for us at home, that something is going on when iv fluids are still not bringing her back down.

We spoke with Infectious Disease and the CHOI team today and we are cotinuing to get test results back.

Ceci’s 1st urine culture- that was drawn from our local ER in Rock Island showed that she is positive for Pseudomonosis bacteria in her bladder.

Not surprising 😑 since it is a long term bacteria that she has battled in the urinary system since she was a little thing. But we did get back some results today from the 2nd urine culture that was taken here at OSF and those did tell us something startling.

The 1st set of cultures told us that the Pseudomonosis infection was susceptible to the IV Cefipime that she has been getting since Wednesday to treat her, but then the 2nd set of cultures showed us that the damn bug upped it’s resistence and the medication was no long effective to treat the infection.

Yep, this bug actually mutated to challenge the IV antibiotic and stay in Ceci’s body.

So we had to switch up the game. Ceci is now getting IV Gentamycin and will also take Levofloxacin orally to cover all grounds.

But that is not all.

Ceci’s cultures revealed that Ceci is also fighting another urinary bug- a nasty Yeast infection inside of her bladder.

Unfortunately it is not surprising since Ceci is taking such high doses of Augmentin twice daily to keep the Spinal Hardward bacteria dorment, but it is very frustrating! Especially for a kiddo that is always on a foley catheter.

Yeast and foley catheter’s can be very painful and dangerous. So we are having to change out her foley several times and they have also started sis on high dose Fluconazole.

The only thing is that we have not received the classification of the yeast infection back yet, so this may change yet again. The major concern that Infectious Disease discussed with me today, is making sure that we have sis on the right set of Antibiotics to kill all this off.

So tomorrow will bring more answers. All the cultures will be finalized by tomorrow afternoon and then we can discuss getting Ceci home and continuing treatment there.

Spirit wise she is doing wonderfully 😊

She is happy, and the day has been filled with reminiscing with the wonderful nursing staff here and talking to everyone we frequently see when sis is inpatient.

It is so bittersweet! We love seeing all of the amazing staff but hate the reasons sis is here.

But everyone on Peds Gen are so great! And it’s not just the nurses and doctors. We have good relationships with the dietary staff to the house keeping staff to the maintenance crews.

Children’s Hospital of Illinois has just been so good to Ceci and our family and we can’t say enough about everyone here ❤ Our home away from home.

Hehehe 🙂 we had to share this picture of Ceci and I from today.

We love to keep the saying “Faith over Fear” close to our hearts and always in the back of our minds- because we know that God is with us through this all and as long as we have Faith it will always overcome the Fear.

It is one of my favorite sayings in the whole word!

Me and sis got dressed for the day and I didn’t even realize that we were both wearing our Faith tees today 😁😁😁 We’re twins!

Made me smile so big when I realized. Faith over Fear 🙌

The LORD is with me; I will not be afraid- Psalm 118:6

Well dearest friends it’s starting to get late and I have some work I need to finish up.

We hope everyones having a great weekend.

We will be back soon with more news and hopefully nothing but good news.

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

~ Spina Bifida Fighters and Survivor ~