Ceci's Courage Crew & Family Too

Oh goodness what’s next lol 😆

I think the lack of sleep is finally getting to me.

I just deleted my entire post about Finding Answers.

So this time around I’ll give you the quick version.

Ceci just returned from CT and xray a few moments ago.

Her doctors are covering all grounds and have decided to make sure that ceci isn’t having any Shunt issues as well.

She’s had this dry cough for a week now and we can’t seem to give her any relief from it. We’ve tried all types of cough medicines, a vaporizer and vicks as well.

I know it sounds crazy but in the past sis had a similar symptom from a shunt malfunction.

Has anyone else had a cough due to shunting issues? We’d love to hear some feedback on this from other hydroshunters. Lol that’s right I just made up a word 😂 2 hours of sleep will so that to you.

But seriously what kinds of odd symptoms have you seen or experienced from a shunt not working?

We did find out from ceci’s viral swab that ceci is definitely illness- sick. She has tested positive for a strand of influenza A again 😖

Her younger brothers and herself, had it about a month ago and apparently the flu isn’t done with us yet.

So they believe with her being so darn sick that it has contributed to all these Cecostomy issues.

Her violent cough, vomiting and crying built up so much pressure in her body that it pushed that darn balloon right through her abdomen wall and has ripped it up.

As of now we were just trying to control her pain and plan on procedure for monday, but we have another call in to have peds surgery come back around.

Her site is becoming more painful and we can’t get the drainage under control.

They removed the balloon and placed a tube into the stoma area to keep the pathway open. Then her pediatric surgeon did a unique taping technique to try to stabilize it until we could get me placement. But it’s not working.

Her nurse just came in and said before we called the surgeon back, he had changed his mind and decided to move procedure to tomorrow due to the pain.

Let’s hope they can get her in early tomorrow to help sis and they can get her pain under control.

She’s exhausted……. physically and mentally.

Be back soon.

Neurosurgery is here to see her about her scans, coughing, headaches and light sensitivity.

Please let her shunt be okay 🙏🙏🙏

I don’t think she can take anymore bad news.

Lots of love and hugs,

Alexis, Ceci and family

~Spina Bifida Fighters and Survivor~