Good evening dearest friends 🌕

Thank you for stopping by.

Today was a hard day for sis and we are so glad that everything is finally settled and she’s able to get some rest.

I don’t even know where to start about how her day went. My brain feels like it’s lost in a thick fog with no clearing in sight. I think that’s called mental exhaustion 😞

I’m ready to crash out myself but I needed to come by and get a little of this off my chest and out of my mind.

Ceci’s side wound continues to pour out drainage at a rate that is keeping me, her nurses and care techs busy. Which in return means that her pain has been at an all time high, requiring an increase of pain medications including a morphine dose to get her sitting up.

The pediatric surgery team was hopeful that ceci was healing internally at a good rate, so they wanted us to get her up this morning and try to do her regular cecostomy procedure and see what happened.

So me, the charge nurse, her nurse and her care tech slowly and carefully used a hoyerlift to get her to a sitting position to start the process.

At first we were very optimistic that things were finally getting better. We flushed 645mls of saline through her intestines and this time the saline seemed to be going to the intended area, without causing a river to form below her from the saline coming straight back out around the tube.

But things did not continue to go well. She had a very hard time sitting up and the pain continued to increase in her wound area and along with it she was also struggling not to throw up.

Then came the elevated BP. The nurse took it 3 times because we were all in disbelief. Ceci’s BP had skyrocketed to 143/126. Not good.

We needed to get her back into bed. This was the worse part of her day. The pain was at an all time high. 10 out of 10 and she couldn’t stand it. Nearly knocked me down to my knees to see her in such pain 😭

Then another new issue. Once we got her settled down and comfortable again we noticed that the darn new tube they put in her side was now sticking out about an inch and a half from her side.

So our wonderful charge nurse who has been caring for ceci at this hospital since she was itty bitty, called pediatric surgery and we got them back to bedside.

They finally seen the amount of pain that ceci has been going through and they came up with a new game plan.

This evening, they decided enough was enough and carefully cleaned ceci’s wound area and deflated the 10 ml balloon holding her site open. Then they cleansed the area as best as ceci’s could handle and used some wound care methods to try to control the continued drainage better.

They also used a taping method to try their best to keep this tube inside her side, since we deflated the only thing holding it in place.

We have to concentrate on healing and her pain levels and right now she’s too tender to withstand an inflated balloon in her tract.

When they removed the 10mls of saline Ceci felt some relief immediately. A step in the right direction 😌

Tomorrow we will meet with pediatric surgery first thing in the morning, to assess everything that we did this evening.

We will hold all cecostomy flushes until further notice and will continue trying to get Ceci feeling back to her old smiling self.

As of now there is no talk about going home and I’m perfectly fine with that. This has been the sickest I’ve seen our girl in a long time and I am not taking her home until I know she’s okay.

We will continue to take it a day at a time. With God all things are possible and Ceci and our family will get through this 💖

Especially with the help of so many sweet, caring friends praying so hard for ceci. The power of prayer is strong and you guys are helping in big ways 🙏🙏🙏

Well it’s 9:45 here and this momma is beat so I’m going to head to sleep.

Before I knock out like a rock, here’s a big shout out to all the sweet souls sending Ceci Ecards!

It made her day to get mail. Thank you dear friends. She had me taping them up on her bathroom door so she can look at them.

I’m sure it helps knowing we aren’t fighting this alone.

Another big shout out to Ceci’s 3 aunties Kiki, Jess and Alex for coming by yesterday evening.

The flowers, balloons, teddy bear and book really cheered her up. Thank you ladies!

Wishing you all a beautiful night.

Lots of love and hugs,

Alexis, Ceci and our family

~Spina Bifida Fighters and Survivor~