Good evening everyone. Thank you for coming back by to check on Ceci.
Today continues to be a trying day for our strong fighter.
We continue to receive the type of news that leaves us both needing to take a deep breath and hoping that we will wake up from this nightmare soon.
Ceci’s spinal CatScan showed concerning results. We knew something was up because during the night they switched her back to NPO status.
Pediatrics came to let us know that the results showed a fluid collection from L2-L5 in her spine. Neurosurgery came in shortly after we started the discussion and Dr. Linn took a look at the scans bedside.
We all stood in silence waiting for him to finish scanning through her pictures.
I was hoping that the doom and gloom that Pediatrics was throwing to us was them being cautious but once Dr. Linn closed the chart and turned to us I could see it written all over his face.
Her fluid collection is large and the doctors do not know for sure what type of fluid it is.
Three types of fluids have came to mind. The dreaded Cerebral Spinal Fluid leak and pooling in her back cavity, a massive Seroma under her muscles or more Infection deep in her back.
Everyone needs to come together for a conference on her care and figure out what the next steps need to be.
Ceci is very sick and we need to know why.
Her pain in the lower back and upper legs is still coming and going and reaching high levels that only IV morphine can bring down and she continues to have Tachycardia. She has been bed ridden for weeks and as you can imagine for a happy 14 year old teen girl, this is one of the hardest parts 😦
The plan as of this morning was to reset the setting on her VP shunt to 0.5, continue with the IV morphine through the weekend to control the pain the best we can, repeat all her lab work early Monday, continue checking on the wound cultures they took of her back Friday to see if there is growth, have Plastic Surgery pulled onto her case and regroup mid morning Monday to discuss what type of surgery Ceci needs……. Yes another surgery 😦
It is so much to take in but we are trying to cope and deal with this the best we can.
We continue praying that God will take all the pain away from sweet Ceci and will finally allow her body to heal so we can bring her home.
I know that God is in control and somewhere in the midst of all this pain and sadness he has a plan for Ceci, but right now it is hard to understand which makes my heart ache.
I had to take a break from writing this update because as I was typing it out Ceci’s oxygen level was decreasing so they have to put her on ½ a liter to stabilize her. She is also having some high pain in her legs that is keeping her from sleeping so the on call doctor is checking to see if there is anything else we can give her since she had 2grams of morphine just 2 hours ago.
Her wound vac is draining a lot more this evening and with the increased pain and her not being able to hold her oxygen level while sleeping, it is concerning.
I’m hopeful that they can find the medication to allow her to sleep again and with the oxygen on and me and the rest of the staff watching her vitals closely, she’ll be able to rest. She’s so tired. Just so damn tired!!!
Before I sign off I need to say thank you to our Courage Crew members that have continued to share Ceci’s story. Thank you very much dear friends ❤
Each day her sites have continued to grow in numbers and support and we are grateful.
We believe strongly in the power of prayer and good thoughts and the more loving people standing by our side believing the same the better.
❤ Thank you for sharing Ceci’s GoFundMe Campaign- Caring for Courageous Cecilia Marie.
I am so amazed and grateful that our call for help has been shared almost 700 times.
We have had several donations come through to help Ceci, me and our family back home, THANK YOU. It is going to help us more than I can explain.
Every $1 makes a difference for our family as I continue to be on unpaid leave. No donation is a small amount 🙂
$5 can provide many of the needs we have. $5 can get some of the medications we can not get covered for Ceci or even a meal while we are away from home. It can also help with the cost of bandages she will need to heal, skin wipes for bed baths, cleaning wipes to protect her from germs, or even hand sanitizer as we continue to worry about her compromised immune system. $5 can have a huge impact! So please do not think that any amount is not enough ❤
Although this stay has been a very difficult one, Ceci is continuing to fight strong and thankfully with sweet friends helping us by donating and sharing her story- I am able to stay by her side for everything.
Thank you for helping Ceci and our family and for helping to ensure I can be with her every step of the way.
I am going to sign out for now.
Ceci’s wonderful nurse has just entered her room with some additional pain medication and valium so I am going to help get her settled so she can get back to sleep.
I will update again as soon as I can.
Lots of love, hugs and appreciation,
Alexis (mom), Cecilia Marie and Our Special Family
With Ceci’s stay being extended again, she can receive Mail at the Hospital:
Cards and Cheer mail can be mailed here at:
Patient Room 608
530 N.E. Glen Oak Avenue
Peoria, IL 61637
Hint: Use the patient’s home address as the return address. That way, if your card or letter gets to the hospital after the patient has gone home, it will be sent there.
Our home address: Cecilia Marie 915 8th Street Rock Island, IL 61201