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Wide Awake and Worried

Ceci's Courage CrewLeave a comment

Morning everyone.

Hopefully our friends on this side of the world are resting peacefully tonight and Our friends on the other side are having a much better day.

We’ve been awake for a few hours now.

Sis is having some issues with low bp so they are monitoring her closely because of the sepsis.

We are grateful to say, even though her bp is low she is coherent and her state of mind is our positive sweet girl.

She’s exhausted but understands why they have to keep waking her and retaking vitals.

They’ve ordered another set of labs, including blood cultures so they’ll be in soon to conduct those too.

Please continue to pray for sis.

That the Antibiotics knock the sh*t out of this bloodstream infection and that she remains fighting strong!

Be back if anything changes tonight……never mind I meant early this morning. Nights over 😳 I don’t think my mind is all together right now.

The worry, stress and lack of sleep have me in the twilight zone.

Be back soon

Lots of love, hugs and appreciation,

Alexis, Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

To help with Ceci’s Medical expenses and hospitalization stay-
Venmo @Alexis-Leihsing

TeamCeciStrong

FaithOverFear

Surgeries # 62 and #63

Ceci's Courage CrewLeave a comment

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