Operating Room Behind Us For Now

We are going on day 15 of Ceci fighting Influenza and all the other medical issues that’s it caused and day 8 of this hospitalization up at Children’s Hospital of Illinois in Peoria.

Ceci continues to fight bravely and is accomplishing steps to get back home but it seems like we take one step forward and have 2 steps back follow 😞

As most of you know, Ceci went back into the operating room today to be sedated so that her Pediatric Surgeon could explore the wound without putting her through anymore unnecessary pain.

The good news was that they did not find significant damage to the tract, that would require them to open her up. But to try to help with the awful pain that Ceci has had to endure, her doctor cauterized as much of the tissue as he could.

Her wound is still gaping open but he’s confident with more time it’ll heal without intervening. He was also able to place an 18 inch tube back into her tract and they used a 10ml balloon to keep it in her intestinal tract, so that we do not have a repeat of this nightmare.

Now on to the bad news. 😞

She did not do well with sedation at all. They ended up needing to put her on oxygen to bring her out of it and she continued to need it in recovery.

She was only under for an hour and her body could not handle it.

This is the second time Ceci has had Influenza in a month and a half and her lungs need more time to heal and recover.

The anesthesiologist commented that she could not stop coughing when they were bringing her out of sedation. So a 6-8 hour surgery with heavy sedation is out of the question right now. There is real concern that she would not make it through.

We have canceled her major Spinal Fusion Surgery on April 23rd.

We are going to focus on getting her through all this right now and staying healthy once she’s back to her normal.

This last year has been one of worse years for Ceci health wise and her immune system is just wiped out.

It’s hard for us both ways.

We have been anxiously waiting to get her spinal surgery done, because it’s a need not a want.

Ceci’s pain from the Scoli is very bad some days and when your 13 year old daughter is the one to finally put her foot down and tell her orthopedic surgeon that she wants it, you know that she’s in much more pain than she’s been voicing.

But of course we can not and will not risk losing our baby girl.

So until we can get her healthy enough to have this major surgery we will have to do our best to keep her comfortable.

After Ceci’s procedure this morning, the doctors wanted us to let her rest until this evening and then retry doing her Cecostomy flush.

They wanted to see if the leaking would be better controlled, if it would be successful, and if Ceci’s pain was better.

We got one of three 😁

Her pain was much more manageable but it continues to pour out around her tube (not normal) and it only worked half way.

She was throwing up during the procedure and did not feel well.

We got her more zofran to help with the nausea and dizziness, helped her get cleaned up, her side covering in gauze and abdomen wound pads and she’s sleeping now. All of this has her very tired.

Before I sign off for the evening I want to continue to thank everyone sending her Ecards, cards, and messages.

You guys have covered her bathroom door with so much love and we are staying to cover her room door too 😁

She enjoys reading the messages and seeing all the cute pictures.

We also want to send a great big thank you to Ceci’s sweet School Nurse Maryann.

Ceci was surprised to get such a pretty box in the mail today and loved the cute unicorn stress ball and amazing smelling lotion.

It just tickled her so much and she loved the smells.

💜 thank you very much Maryann. Thank you for surprising her with such sweet gifts.

Please continue to pray for much better days ahead for Ceci and that I’ll get to take her home soon.
She just wants to be back home in her own bed to continue to recover and rest.

Emotionally this has just torn Ceci down but I’m happy to say I’m seeing bits of her come back together.

One day at a time


Lots of love and hugs,

Alexis, Ceci and our Family

~Spina Bifida Fighters and Survivor~


Good Day and Then

Good morning dearest friends 😊

I can’t believe it’s already Friday. One thing that seems uncontrollable when your a patient in the hospital, and a parent fighting right by their side is the time.

We lose hours as well as days. I think that’s why the hospital rooms have the patient boards. So they can at least write the date down to remind us that the world is continuing- even though we feel like it’s stopped.

We are getting ceci cleaned up a little this morning and we are patiently waiting for O.R. transport to come grab us and take us down to the surgical waiting area.

Ceci’s ready to get this procedure out of the way and get some sleepy time meds to drift off and take a good nap. She’s so funny. She said she always sleeps so well when she has surgery. Makes her feel refreshed.

I can’t wait until we know more about the plan. We aren’t rushing anything but I know it would mean alot to Ceci and our family to all be together for Easter Sunday.

The boys are worried that this will be the 1st Easter we will be apart, but I told them to keep the faith. God is working on healing for Ceci ❤

Yesterday was a better day for sis.

Her uncle Mike came up to visit and they had a WII marathon and then a checkers championship.

It was so good to see her smile and although she was having coughing attacks after each laugh, we got to hear that wonderful sound again.

Everything was going great. We even went 8 hours with just Motrin.

But then something unexpected happened.

Ceci was exhausted and ready for bed. Me and the nurse were changing her wound dressings and getting her even medications together when ceci lunged over sobbing.

She started complaining that her stomach hurt really bad. Of course we figured it was her side again but it wasn’t.

She had pain that she rated as an 8 in the center of her abdomen to the opposite side of her wound.

It continued for 10 minutes to peds surgery was called bedside.

At midnight they ordered xrays and another dose of Norco to help her sleep.

We aren’t sure what in the heck caused the pain last night. But she’s much better this morning.

We didn’t hear results as of yet but they have ordered repeat scans in the operating room today. So if it’s something new they’ll catch it.

It was very odd 🤔

Well guys we finally got a set of Uno cards so we are going to play a few games before she heads down.

Please pray hard for nothing but good news for sissy during this surgery and the most important part- that she will not have an adverse reactions from the anesthesia today.

With her having influenza last week, this is a big concern.

We’ll all be praying together 🥰

Update after surgery.

Lots of love and hugs,

Alexis, Ceci and our family

~Spina Bifida Fighters and Survivor~