Day 39

Hi guys! Thank you for coming back to check up on our girl.

Sorry I didn’t update yesterday. Things have been up and down with our sweet girl, which is keeping me on my toes.

Since Friday, Ceci has been having some issues with her oxygen levels so she continues to need oxygen to help her stay at an acceptable saturation level.

She gave us all quite a scare yesterday afternoon. Me and the tech were helping her with a bed bath and we turned her onto her right side and she couldn’t breath.

She was crying, saying her throat hurt badly and started coughing repeatedly. We sat her straight up with our help and she was still struggling and down to 85%. The nurse came in and put her back on oxygen and went to get to the doctor.

Thankfully after 5 minutes of sitting straight up and us calming her down we got her back to 91%.

She spent the next 15 minutes coughing and spitting.

Unfortunately with this being Day 39 of Ceci being in bed, and her 4th surgery in less than 40 days and she’s not moving much the doctors suspect she has lung Atelectasis.

They don’t suspect pneumonia which is good but the Atelectasis is scary.

They are watching very closely to make sure it doesn’t get worse or turn into something else.

Ceci had surgery again on Tuesday to open her back to see what type of fluid was pooling in her spine and too see if they could find the source of the leak.

The doctor said as soon as he opened her back all the way up he was met with a large pool of dark brown thin fluid all the way down to her hardware from her scoliosis surgery. Not good 😥

He collected fluid samples for culture and then aspirated all the fluid out. He then spent some time pushing on her back trying to find a CSF leak or any other type of leak that would explain where this fluid is coming from but had no luck.

So he washed out her back once again and then opened up her Dura to get to her spinal cord.

He worked on deteethering her cord and said he could see why her legs have been hurting so badly. Her spinal cord was being pulled tightly due to scar tissue and cysts.

Once completed her doctor closed her dura back up and cleaned out her hardware and back one last time.

His team took tons of photos in surgery for the plastic surgery team to review and then worked on closing her back.

Doctor said he had to use 2 complex types of suturing and it was very tight, but again he got it closed. They placed another wound vac on top of her incision site and tons of compression dressings.

Again since we do not know why her back continues to pool fluids, we don’t know if the problem is fixed 😪

3 different surgeons have looked into her back in surgery and we still do not have any answers. This is the worst part!

Then yesterday we got some more bad news. Ceci’s back cultures from Tuesdays surgery are growing bacteria 😭

There’s more infections in her back.

She’s growing an uncommon type of Staph and Enterococcus Faecalis. 😭

Infectious disease has started her on iv Zosyn for now to begin treatment while we wait for the final culture results with the antibiotic susceptibility report. Once we have that we’ll know which antibiotics will beat the hell out of these bacterial infections the best.

Of course this is very frustrating for us all since she was just treated for over 2 week’s on another iv antibiotic and these 2 grew while she was actively on antibiotics.

I want to write a longer post for you all, but we are getting ready to change out Ceci’s port line needle and all her dressings so im going to go for now.

I can’t say thank you enough to everyone that has shown so much support to ceci and our family through this all.

Ceci’s been receiving so many messages of support, cheer mail and donations to our GoFundMe campaign to help while im out of work.

Thank you so much ❤❤❤

Be back as soon as I can.

Lots of love, hugs and appreciation,

Alexis (mom), Cecilia Marie and Our Special Family 💜

~ Spina Bifida Fighters and Survivor~

2 thoughts on “Day 39

  1. Juanita Moore August 30, 2019 / 6:07 pm

    Hang in there Ceci. I continue to pray for you. You look so pretty in this photo, despite all that you have endured. Alexis, thanks for the update. I was worried yesterday when I saw no post. I am praying for you and your family as well as Ceci. You are such a devoted mom. I admire your courage.

    Liked by 1 person

  2. Inez Rathjen August 30, 2019 / 12:18 pm

    Hang in there precious girl & have faith. The doctors WILL get this figured out. You’re looking good!

    Liked by 1 person

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