A painful wound dressing change for Ceci, followed by an additional dose of Narco and our sweet girl is resting again.
Her site continues to leak intestinal acids all over her skin and its almost unbearable for sis.
We are doing dressing changes every few hours and site cares, with no relief in sight. And this is with Ceci laying immobile in bed.
She can barely tolerate the pressure from sitting up.
We tried having her sit up for half an hour yesterday and she was begging to get back into bed to relieve the pressure to her site.
I’m at a loss as to what comes next…….
When Pediatric Surgery rounds in the next few hours, we will discuss a plan of care.
We have got to get this under control!
I can’t take Ceci home like this. We’re both exhausted from dealing with this for over a week now and with Ceci also having the Flu, she’s feeling defeated.
My sweet girl needs some relief now! Hang on sweet Ceci, hang on momma.
I woke up today unable to remember what day it is. Isn’t that nuts!?!?
When your focused on just wanting your child to just feel better, everything else seems to fall by the weighside.
I haven’t been to work in a week, I have no idea where my schedule is, I know that Cec is suppose to get her cast cut off this week but my mind is so foggy I can’t remember the day and I have no idea the last time I washed my hair 🤔🤪😱
Once I get ceci’s comfy enough and I speak with Dr. Robertson (peds surgery) I’m going to have to run down to the Walmart here to buy some clean clothes and other personal items.
In the rush to get Ceci to the ER the other evening, I some how threw 3 shirts, 1 pair of shorts 🤣 and the boys socks into my over night bag. Yep total lack of sleep this week. I’m sure I’m past Zombie status.
My normal laundry game was totally off too with how sick sissy is.
But I’m pretty positive I beat the world’s record for washing the most towels, blankets and sheets in one week.
I should probably think about investing in some Tide stock. I have really put money in their pockets lately 🤑
Im sure that my laundry situation did not help with me trying to get clothes together in a panicked state the other night. Oh well, what can I do.
Well I desperately need some coffee. So im heading down the hallway to look for the trusty coffee cart.
I’ll check back in, in a few hours to tell you guys what’s the latest for ceci’s plan of care.
I was just told that peds urology is also being pulled into her care because her urine seems to be showing signs of a UTI.
Seriously no more Devil!
You back the heck away from my little girl!!!!
Continued prayers needed for our fighter 💞
Lots of love and hugs,
Alexis, Ceci and our family
~Spina Bifida Fighters and Survivor~