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 💜