Hi everyone, mom (Alexis) here.

Boy has it been a little bit since we were able to get on here and update everyone.  I’m sorry about that friends. I wish I could say that it was because Ceci has been doing well but unfortunately our fighter has been struggling.

Ceci’s health has been rough on her lately. The past 3 months or so Ceci has been in and out of the local ER’s and children’s hospital in Peoria. She’s missed more school this school year than i think she ever has in one year, and is starting to struggle with her grades 😦

Infection after infection has been causing Havoc on her body and just beating her down. She has been fighting UTI after UTI along with infections in her abdomen. Poor girl was being sent home from school at least once a week for Fevers and pain. Then we hit a breaking point the week of Christmas.

Christmas Eve I was scheduled to work when I received a call from home that Ceci was not doing very well. I left work to be with our girl and could tell right away that she was not doing well or feeling like herself. She was having some real bad side pain on both sides of her torso and looked red and flushed. She requested some pain medicine which is a rare occasion for our strong fighter and asked if I could please get her into bed so she could sleep. She ended up sleeping for about 3 hours.

When she woke up she said she was doing better, so we had family over for dinner, dessert and to celebrate our family.  By the end of the night she was wore out and fell right to sleep.

The next day Ceci and her brothers woke up super early, happy and energetic. After all it was Christmas 😀 They played all day long only stopping for food and showers. We were hopeful she was finally feeling better and after much cleaning up, we got into bed for the night.

Around 3 am I awoke to our girl crying on the monitor 😦

I rushed upstairs to her bedroom to find Ceci lunged over in bed. She was having very bad pain in her abdomen and shooting up both sides of her body. I knew that it was not good.

Poor girl begged and begged me not to take her to the hospital again. She told me that she was exhausted and just needed some ibuprofen and more sleep and then she would be willing to make the road trip back to Peoria with me later in the morning. Of course I wanted to just scoop her up and take her right then and there, but after more crying, pain meds and a vitals check, she was sleeping peacefully again.

When she did wake up I knew that a hospital visit was a must. Ceci’s abdomen was rock hard, red, swollen and her pain level was still pretty bad. After a discussion with her Surgeon’s office we rushed to Peoria to get her into the ER for evaluation.

She was admitted as soon as the attending doctor seen her abdomen.

It was clear she had an infection and her bp was high along with her resting heart rate. She was in the 130’s.

Her blood work came back showing an infection somewhere in her body and then the Urine Analysis confirmed that it was also in her bladder and kidneys.

Since they did not know what type of infection we were fighting (have to wait 1-2 days for culture results) they started her on wide spread Antibiotics and Anti-fungal. She was very dehydrated as well so they started her on fluids as well.

Surgery came to see her and tried to access her urinary stoma and could not. She was crying in pain, the stoma was bleeding along with secreting infection every time it was touched.

They ended up giving her pain meds to help with the discomfort and let her rest for the night. The next morning her peds surgeon came to see her and attempted to look into her stoma again with no luck. The pain was just too much for our girl. So he decided that surgery was a must.

So they took her into the OR again to perform an I and D, explore her site by camera and xray and to try to access her urinary stoma pathway since the infection had spread to this as well and made it swollen and angry.

A few hours later he came to talk to me.

Ceci had an abscess under her abdomen skin that was full of infection and was causing her such pain. They opened it up, drained it as much as possible and then placed a plastic clip type device inside to keep it open and draining. They also were able to finally find her urinary stoma pathway by using a guided wire and xray imaging. Her poor body had spread the infection from her pathway, to bladder, to kidneys and Cecostomy site as well.

She ended up getting more iv antibiotics and fluids to flush out her system. After surgery we were finally seeing improvement 🙂 Her pain was tolerable again and her appetite was back. When we finally got her culture results back, the doctor allowed us to switch to oral meds and I was able to take her back home.

Since she’s been home she’s doing better day by day. We started out doing 3-4 wound dressing changes a day, due to the site still draining infection but the last few days we are down to maybe 2. She is finally getting her energy back and she can’t wait to start school up again on Tuesday.

We head back to see her Surgeon this Thursday and so far we have good things to report 🙂 He will decide if we can close up the site by removing the plastic then or if he believes she needs it in longer. We are both hoping it will be this Thursday.

We’ve decided that 2019 is going to be a much better year! Ceci is staying positive and hopes that this last surgery will finally bring her some peace from all these infections and with the warmer weather right around the bend, all these infection causing germs will stay far away from her. Fingers crossed for nothing but better times ahead ❤

Although it was a worrisome time, we had a great Christmas with our family and enjoyed spending New Years Eve at home, with our loved ones ringing in the new year.

We hope that you all had a very Merry Christmas as well and a splendid New Years eve!!!

As always we can’t say enough how much we appreciate everyone continuing to pray and send good thoughts out for Ceci and our family.

We will be back much more often in 2019 and can’t wait to share some exciting news with you all and many more pictures 🙂

Signing out for now, but have a wonderful rest of your weekend everyday.

 

 

Lots of love and hugs, 

Alexis, Ceci and family

~Spina Bifida Fighters and Survivor~