Okay yall this is our last update for the evening.
Well things changed quickly for sis.
The pain has been too much for her to tolerate so her procedure originally scheduled for monday, then rescheduled to tomorrow, ended up happening this evening- bedside.
The pediatric surgeon’s resident, removed the tube that was holding her track open and placed a much bigger size tubing.
The balloon ripped up her abdomen wall so much that they had to go from her normal size tubing 14 to an 18 inch.
It did not go in smoothly 😞 my poor girl.
They gave her a high dose of Fentanyl and an oral dose of Narco to help ease the pain. But when he went to insert the bigger tubing into the overly irritated and ripped up abdomen wall, it knocked the wind out of ceci so badly I had to grab her tightly and tell her to breath.
Even with the pain medicine it was too much for her to bare.
And we still do not know if she’s out of the clear with this darn wound.
She still has so much stomach acid pouring out of it that it’s continuing to burn her skin and they tried to flush fluids through her intestines with it and it just poured out of the site instead of going through her intestinal track.
We are working on getting her into a fresh gown now, getting her comfortable for the night and we’ll revisit everything with pediatric surgery tomorrow.
We are hoping for an uneventful night and loads of 😴 sleep for both of us.
We just want to take a second to tell everyone thank you for the kind messages and emails 💜
This has been a very trying week for ceci and our family.
Be back tomorrow.
Lots of love and hugs,
Alexis, ceci and our family
~Spina Bifida Fighters and Survivor~