Ready to Go

We’re packed up and ready to go home!

Ceci slept the day away yesterday and is feeling much better today.

We’re waiting on our discharge paperwork and then we are loaded the van and hitting the interstate 😊

Prayers please for safe travels and that Ceci’s incisions heal nicely.

We have to watch her back incision to make sure she doesn’t start leaking cerebral spinal fluid again. Fingers crossed tightly that this won’t happen!

We’ll be back soon.

Have a beautiful Saturday everyone 🥰

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

~Spina Bifida Fighters and Survivor ~

TeamCeciStrong

Out of Surgery

Our girls out of surgery but she’s struggling with pain, nausea and a pressure headache.

We’re not going home tonight.

The Pediatric surgeon had to place the new port on the other side of her chest, so making the pocket between her skin and muscle wall has caused allot of soreness and pain.

She has 3 incision sites.

One on each side of chest and one on her back.

Usually our girl is up and moving around with her crazy fighter self, but this has our mighty gal wore out and very sore. She’s barely been awake.

Ceci doesn’t want anything strong so they are giving her ibuprofen and we are using ice to calm the areas.

Hoping after some sleep tonight and more fluid pumping through her body sis will be feeling much better tomorrow.

I’ll keep you all updated if anything changes.

Thank you for keeping her in your prayers dearest friends 💗💗💗

This was all unexpected. But she’s fighting strong as always.

Be back soon.

Lots of love, hugs and appreciation,

Alexis, Cecilia Marie and Our Special Family 💜

~SPINA BIFIDA FIGHTERS AND SURVIVOR~

https://www.gofundme.com/f/Teamcecistrong

TeamCeciStrong

Surgeries # 62 and #63

Hey guys

Ceci is waiting to head to pre-op holding.

After much discussion yesterday between Pediatric surgery and Neurosurgery it’s been decided that it would be best for Ceci to have two different surgeries today.

Her port tubing is displaced so Dr. Robertson and IR will go into together to remove her port and be sure to get all the tubing from her chest cavity.

Then they will work to place a new power port in her chest.

Once they are done Dr. Linn will go in and open Ceci’s side to remove the Lumbar shunt that was placed back in October when she had the massive spinal infections.

There’s big concern that with her having a reprogrammable VP shunt in her head and an LP shunt in her spine that her body is draining too much fluids off her brain and spine and that may be what’s causing Ceci to be so dehydrated and why we haven’t been able to wean her off the need of needing port line fluids everyday.

Ceci’s bp has been high the past 2 days, which is new and concerning. So they ordered a cmp, cbc and of course her cross and match and coag for surgery.

Happy to say everything is in normal range.

We’re hoping after surgery and when she’s getting her normal amount of iv fluids again that her BP will come down. High BP is not normal for her.

Please pray for God to guide the surgeons hands and that Ceci’s pain can be controlled after both procedures.

Peds surgery is concerned that removing the port is going to be tricky because she’s had it for 3 years, it’s moved a great amount and it looks like it may be fused to her chest wall 😔

Ceci’s determined to sleep in her own bed tonight after surgery but we’ll have to see how mommas is doing afterwards.

Be back soon with another update.

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

~SPINA BIFIDA FIGHTERS AND SURVIVOR ~

TeamCeciStrong

Back Again

Well this isn’t the good news we wanted to post 😪🥴😕

We are waiting to get a room on the children’s Floor here at Children’s Hospital of Illinois.

Just had an appointment with Pediatric Surgery and Ceci’s Power Port needs to be replaced.

Her port stopped working on Tuesday and she needs hydration. So she’s getting admitted today and surgery tomorrow.

Prayers that crisis is able to get a deep peripheral line started on our girl and are able to get her fluids.

Update later when we get to a room and have a plan.

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

~Spina Bifida Fighters and Survivor~

TeamCeciStrong