Thank You Friends πŸ’œ

πŸ’œβ€ Thank You so much! β€πŸ’œ

We can’t say thank you enough to everyone sending sis cheer mail πŸ₯°

She’s been receiving so many sweet gifts and heartfelt cards.

Ceci’s Courage Crew is the best πŸ’—

Y’all have strengthen her courage so much by reminding her she’s never alone in this fight!

Thank you for loving our girl so much and for sharing her with so many others πŸ₯°

For our followers asking for an address πŸ’Ÿ

With Ceci’s stay being extended again, she can receive Mail at the Hospital:

Cards and Cheer mail can be mailed here at:

Cecilia Padilla
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

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 πŸ˜₯

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 πŸ˜ͺ

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 πŸ’œ

~ Spina Bifida Fighters and Survivor~

http://www.gofundme.com/supporting-super-ceci

Out of Surgery

Ceci is out of surgery and back to her room.

Dr Linn reopened the wound from her bottom to above L-5 and could not find a problem in the dura causing a leak, but he did find a large collection of unknown dark fluid.

He took cultures of the fluid and then suctioned it out and cleaned it very well.

He then opened her Dura and performed her 3rd spinal cord deteethering.

He closed the surgical site as best as he could, but we still do not know if it will hold together.

Another wound vac was placed on top to try to keep it together along with compression dressings.

The next week will show us if she’s getting better.

Repeat lab work early in the morning.

She’s needing oxygen again after coming out of surgery, but we’re hoping with the big fluid collection being removed off of her spinal cord her breathing will improve.

Hoping SO VERY HARD, that we’re finally moving in the right direction.

This has all been too much πŸ˜–

Update again soon.

Lots of love, hugs and appreciation,
Alexis, Cecilia Marie and Our Special Family πŸ’œ

~Spina Bifida Fighters and Survivor ~

http://www.gofundme.com/supporting-super-ceci

Day 36

Change of plans- Ceci is going into surgery with Neurosurgery and orthopedic surgery soon to reopen her back.

We just got the call surgery is coming to get her now.

Her CRP is higher and her hemoglobin lower 😭

They are going to explore for these leaks, drain the infection, deteether her spinal cord, collect wound cultures, and take photos for plastics.

They aren’t sure what’s going to happen when they get in to be honest πŸ˜–

She should be in surgery 3-4 hours.

Please please please- pray for Cecilia hard and loud.

She needs our Lord’s protection and guidance for the surgical team as they work hard to figure out why our girl is so sick.

I’m very scared right now…..

Please lord heal my baby girl πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™

http://www.gofundme.com/supporting-super-ceci

Procedure Scheduled Tomorrow

Ceci will be heading back into the Operating Room around 10:30am tomorrow for the 1st of 2 needed procedures.

Dr Akeson and a radiologist will work together to look at her surgical site and also try to pull off some of the fluid building up around her spinal cord so it can be cultured and to find out if it’s strictly infection or csf.

Turns out there is 2 different fluid collections showing on the CatScan. The one they are highly worried about is deep in her back.

Palliative Care is now following Ceci and her medical struggle.

Had to start her on a Morphin PCA pump today because her pain is out of control.

Due to some very bad pain we didn’t get to sleep until nearly 2am this morning and were back up at 6am for the same pain.

The pump is helping to manage her pain much better.

Today is Day 35 and we’re no closer to getting our sweet girl home.

We continue to worry about our sweet girl and pray that this war on her body is over soon.

I’ll update as soon as I can again tomorrow.

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

http://www.gofundme.com/supporting-super-ceci

https://www.facebook.com/events/2343652249223135/?ti=icl

Why is Everything so Heavy

Good evening everyone. Thank you for coming back by to check on Ceci.Β 

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 Β½ 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.

http://www.gofundme.com/supporting-super-ceci

I am so amazed and grateful that our call for help has been shared almost 700 times.Β 

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 πŸ™‚

$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.Β 

Thank you for helping Ceci and our family and for helping to ensure I can be with her every step of the way.Β Β 

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 FamilyΒ 

With Ceci’s stay being extended again, she can receive Mail at the Hospital:

Cards and Cheer mail can be mailed here at:

Cecilia Padilla
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