Extended Stay

Good afternoon dear friends and welcome back.

Thank you for coming back by to check on Ceci.

Ceci’s real sick and it sounds like we’ll be staying here at Children’s Hospital for a bit longer.

Pediatric Surgery is very concerned about her wound and we can’t let her go home until she begins to heal.

Her site continues to pour out fluids, burning her skin and causing awful pain to the wound itself.

Just imagine pouring hand sanitizer on a wound 😖 That’s what sis is going through over and over again.

Her pain management is the #1 priority for us right now. She’s getting around the clock Norco along with motrin to try to keep it tolerable.

Pediatric surgery is hopeful that she can heal without another surgery to her side, but it’s going to take time and she’ll need to be flat.

So the plan is to keep Ceci inpatient and in bed and as immobile as possible.

She’s on a clear fluids diet for the next few days and we will not even attempt to do her cecostomy flushes.

Pediatric surgeon wants to keep her for another week and see where we are after that time passes. If she’s not healing on her own we may need to surgically intervene.

Another problem that our girl is fighting, is a Urinary Tract Infection. Urology will become part of her hospital team and will come do a consult tomorrow morning to see what antibiotics she needs to be put on.

Neurosurgery is also part of her hospital team and has been following ceci since she had her head CT and shunt series done yesterday.

The shunt series looked okay but the head ct did show an increase in her ventricle size. Its not something that needs to be addressed at this moment but she will be followed to make sure her condition doesn’t worsen.

Dr. Lin (neurosurgery) will also be coming in tomorrow morning to see her. There’s been talk about the damage to her abdomen wall being an issue for her shunt.

Ceci has a VP shunt in her brain to control her excessive fluid accumulation caused by her Hydrocephalus. The tube drains off the excess cerebral spinal fluid from her brain and sends it to her abdomen where it drains and the body gets rid of it.

The big concern right now is that the acids and intestinal contents could make its way to the area that the shunt tube drains to, which in turn would be disastrous.

It would cause a major and life threatening infection to ceci’s brain.

They have brought up the possibility of needing to take ceci in the operating room to externalize her shunt until things get better. But of course there’s risks with this too. Including putting ceci under general anesthesia while she has the flu 😔

So as you can see things are complicated and confusing for all of us right now.

We will reevaluate everything tomorrow. For today we just need to let ceci get some rest.

Since we are looking at a longer stay for our sweet girl. Me and her dad have been on the phone all day trying to make arrangements for our boys and prepare for everything. We have so much to get figured out.

Ceci’s sweet friend Miss Cindy is actually on her way here to spend some time with our girl. She’s going to stay the night with sis and im going to head home to stay the night with our boys and get some more things together for our stay.

Things are very rough right now but we are going to stay positive about this and keep the faith that God has a plan and will see ceci through this all.

Please continue to pray for our sweet girl and send up positive thoughts for healing.

I’ll be back soon.

Lots of love and hugs,

Alexis, Ceci and family

~Spina Bifida Fighters and Survivor~


#Teamceci Strong

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 ðŸĪ”ðŸĪŠðŸ˜ą

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 ðŸĪĢ 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 ðŸĪ‘

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~