Wednesday 3-4-2019

Quick update:

I wanted to reach out and let you all know Ceci is continuing to get better and is tolerating her antibiotics at home very well.

Her brother’s missed her so much this hospital stay 😊 and have been glued to her side since she came home on Sunday.

Nicky James and Ceci have been enjoying the warmer weather and doing one of her favorite things- playing basketball together πŸ€

She’s very happy to be back in her own bed and she says she’s feeling almost 100%

She’s excited that this weekend is suppose to bring highs close to the 70’s and she’s already begging to get her fishing gear out so her and daddy can go fishing 😊 I love how much my family enjoys the outdoors.

On another note- i’m sorry I’ve been quiet this week.

I won the sickness jackpot and ended up with Astrovirus- the horrible tummy bug the kids have been fighting.

Since Monday I’ve been miserable with high fevers, body pain, chills, stomach pain and all the other gastrointestinal symptoms that come within tummy viruses.

I have slept for most of the past 3 days and this afternoon is the first time I’ve been able to function. I feel awful knowing the kids had this too. It is one of the hardest stomach bugs I’ve ever had πŸ€’

I’m so glad I’m starting to feel better.

Starting this Friday the kids are on Spring Break for 2 week’s and the boys are super excited Lol. They have plans to stay in pj’s, eat junk food, build forts and stay up all night πŸ˜„πŸ˜ƒπŸ˜ their words hehehe.

We’ll see πŸ˜‰

I told them after such a tough past 2 week’s we’ll go out for some froyo on Friday and maybe a walk by the river.

We need some relaxation as a family.

Well I’m going to go for now. My head is starting up again so it’s time to get some fresh air and see if that helps.

Thank you all for the emails, messages and texts checking on us πŸ’• you guys are very kind.

We’ll be back soon.

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

~Spina Bifida Fighters and Survivor~



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 πŸ™‚

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 πŸ˜‘ 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 πŸ™‚ 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 πŸ™Œ

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 πŸ’œ

~ Spina Bifida Fighters and Survivor ~



Better Day

Good morning dearest friends and welcome back.

Thank you for taking time to check up on our girl 😊

We just heard back from the Peds team and it sounds like we are slowly getting test results in for what was causing sis to be so ill.

Her urine culture is not finalized yet but she does have a nasty UTI again. We are waiting on the specification of the bacteria but so far we know the colonization count is over 150,000 and it is a Gram negative bacteria.

Pesky kind! Usually when Ceci’s infections come back like this it is either Pseudomonosis, Eccoli or Klebsialla.

We will wait on the final results to have the specification and then Infectious Disease will let us know if she needs a different IV antibiotic to get our girl back to 100%.

She received a heavy dose of IV antibioitics in our local ER and they are also treating her here at CHOI with IV Cefepime every 8 hours.

As of now, she will receive 7 days of Cefepime every 8. But again this is based on if the bacteria ends up being a resistant kind.

She’s on fluids for her dehydration and to flush out her kidneys and bladder.

Her GI panel also came back and she tested positive for a tummy virus called Astro virus.

It’s been causing the tummy pain, nausea, diarrhea and dehydration. And then to make it harder this darn UTI has been causing her bladder spasms.

So we know that Ceci is fighting 2 different battles right now, but the good news is that she is doing better 😊

She’s currently eating Pizza for breakfast, watching Grey’s anatomy and her vitals are looking great with the exception of the Tachycardia. But the Tachcardia is on the lower end for her being sick- 125 so that’s a postive.

She’s wanting to get up and out of this hospital bed, so that’s another big positive!

After she finished her food, we are going to help her get cleaned up a bit and into some comfy PJ’s and up in her wheelchair for a bit.

She’s on contact precautions, because of the tummy bug so she’s not able to leave the hospital room but it’s a step to getting back home.

We know that she will be here until at least Monday- which is a bummer but with sis’s history of resistant UTI’s it’s much safer to have her here in Peoria inpatient until we have the resistance panel back for the bacteria.

Then once we do, it sounds like we’ll have clearance to bring her home and continue fluids and IV antibiotics at home until we have ran the course of treatment.

I’m grateful that over these 14 years we have had such amazing medical personnel caring for sis that have been kind enough to teach me so much about medical procedures and caring for her numerous conditions.

Because of these wonderful people ❀ I am proud to say that the majority of Ceci’s medical needs can be completed by my self, allowing us to keep sis at home for many treatments instead of inpatient.

I appreciate this more than I can express. I have the knowledge of a Nurse, the understanding of a Doctor and of course the heart of a mom ❀ ❀ ❀

Well guys I need to sign off for now, but will be back soon.

As always we are grateful for your continued love, prayers and support.

Thank you for being a part of #Teamcecistrong

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

~ Spina Bifida Fighters and Survivor~

❀ With Love Shout Outs ❀

Thank you so much to Auntie Kathleen for helping us with gas funds to make the 1.5 hour trip here and back. And for always being there for sis and our family.

Thank you so much to Momma C. for also helping us with Dinner for the boys during the Choas of sis being hospitalized and for the donation to her VenMo medical fund. Your support means so much!

It really helped so much ladies. Thank you ❀

She’s Awake

After a very hard day and sleepless night, our girl is awake and her vitals are coming back down to a stable level.

You know it’s been a rough night when you wake up finding yourself talking to the nurse (before your aware your awake), after only an hour of sleep with your shoes still on, laying side ways on the bed 😳πŸ₯΄πŸ₯ΊπŸ₯΄

But hey the sun is shining through our hopsital room window and they are bringing me a big cup of coffee, so it’s already looking better 😊

Ceci’s asked for some breakfast, which is a wonderful sign and she’s sitting up watching Grey’s Anatomy and

The doctors are continuing to run tests but believe that sis has a major bladder infection as well.

The plan is to continue IV fluids and IV antibiotics along with pain medication today, until we get back her blood and urine cultures.

The very hard part is the fact that her body just can not hold an IV πŸ˜” after only a few hours of being accessed her deep vein access clotted off causing Ceci severe pain and we had to discontinue use.

After major discussion it’s been determined that Ceci needs access and at this time her port is still usable, so they are re-accessing her port.

They are running heavy duty antibiotics through it, so the hope is if the infection is just at the skin level of the port, it’ll clear up.

But if her blood cultures come back with growth and the infection is in her blood stream, we’ll have to discuss removal of her port 😫

In the mean time we’re going to think positive thoughts and remind ourselves that sis has thousands of prayer warriors and good thought angel by her side praying relentlessly for her to heal and get back home!!! πŸ™ŒπŸ™πŸ™ŒπŸ™

We know that God has our back and so do you πŸ’•

We love you all!

Thank you for the amazing outpouring of love, concern, prayers and support.

I’ll update more as soon as we know more.

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

Nearly 8pm

I wish I could say that Ceci’s resting peacefully but not the case πŸ€’

She’s been sleeping here and there but once the pain and fever medication wears down she’s awake and miserable.

There’s been some delays with her transfer so we’re still an hour and a half away from Children’s Hospital.

They gave Cec 2- 1,000 ml fluid Bolus’s with her antibiotics but she’s still not good.

Her bp is 138/102 and her heart rate is riding the 140’s. So they are increasing her fluids again.

As of now the ambulances ETA is 8:15. So hopefully we’ll have her in Peoria before midnight.

We don’t need our girl getting critical. The wonderful nurses here are pushing to get her transferred asap.

Thank you for all your kind messages, prayers and support.

EMT is on the way

EMT is on it’s way to our local hospital to get sis πŸš‘πŸš‘πŸš‘

Ceci’s being transported to Children’s Hospital in Peoria because the Emergency Room Doctor believes she has a port line infection.

They’ve de-accessed her port and with the help of the PIC team and an ultrasound they were able to place a deep vein IV to get her on fluids and start wide spectrum iv antibiotics.

The huge worry is- has the infection spread to her blood stream?!?!

Ceci never fevers πŸ€’ so her temp being over 102 is dangerous.

Please pray for safe travels for us both and that they can get Ceci’s pain under control.

I’m going to drive behind the ambulance, with Ceci’s power wheelchair in our van.

I’ll update more soon.

Please keep your prayers and good thoughts coming for comfort for sis.

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

~Spina Bifida Fighters and Survivor~




Medical Fund Donations –
(automatic deposits/ no fees at Venmo):

Heading to the Emergency Department

Can’t update much right now, but Ceci could really use some of that Prayer Magic from all of her Courageous Crew today.

We’re getting ready to head to the Emergency Department shortly.

Since 11pm she’s been running high fevers, has chills, horrible head pain, and her entire body hurts.

Her iv pump went out at 3am so it caused a load of issues but thankfully one of the wonderful nurses from Unity Point at home was kind enough to bring a loaner pump to prevent her from having to head to the hospital at 3am.

Please pray it’s not Influenza or a port line infection πŸ˜₯

Last year influenza A put her in the hopsital for 2 weeks.