It has to Get Better Soon

Good evening everyone. 

Sorry I am just now updating about our girl. 

I don’t mean to leave you guys in the dark. I have tried several times yesterday and today to sit and write an update, but each time began to feel the tears starting up and had to stop. 

These few days have been very frustrating for Ceci and our family. 

Yesterday we were unable to remove Ceci’s wound vac and compression dressings from her back surgical site because she was continuing to have drainage. So Orthopedic surgery decided to keep it in another day and see how she did last night. 

All of our teams were frustrated because we were curious to see how her back was doing and also because Infectious Disease wanted new cultures of the wound.

Yesterday was a hard day. Ceci’s pain got worse throughout the day in her lower back and then her upper leg pain came back full force and then her tummy. 

We ended up having to restrict food again and had to go back to the IV morphine, after weaning her to the oral morphine for 2 days. We did not know what to make of the increased pain but got her as comfortable as possible and let her sleep. 

Things continued to get worse through the night. Ceci has been Tachycardiac (rapid heart rate) since last night and her pain was hard to control. 

Things got much worse today 😦 

Orthopedic Surgery had a team member come over and decided it was finally time to remove all the dressings from her back and her wound vac. We were excited and optimistic because they were talking about sending her home on Monday, with just sterile dressings and oral antibiotics since the drainage had begun decreasing over night. 

I know it was just one doctors opinion and we shouldn’t have gotten our hopes up but we have been trying our best to stay positive and Ceci has been her soooo long so we were hoping for a break. 

We gave Ceci a dose of IV pain medication and I began turning her to her side slowly to reduce her pain. Her Orthopedic PA turned the vac off and started removing the dressings and when the final one came off and she looked down, I knew it was not good. 

Her face told the entire story and my heart broke for Ceci all over again 😦 

The surgical wound that was closed with yet another surgery, on the 15th is reopening AGAIN!!! 

The stinging that Ceci has been feeling on and off the last few days was in fact her poor back skin ripping away from the thick sutures that her doctor placed over 8 days ago. 

The PA took a bunch of photos and rushed out to the hallway to send them to Ceci’s orthopedic surgeon, because there was no way we could keep her back exposed and uncovered. 

In the 5 minutes that it took her to get this done and come back into the room, Ceci’s bed was covered with fluid and blood. The fluids were coming out of the incision site and dripping all over her bed. They covered it with a surgical dressing and then called for Neurosurgery to come to her room to evaluate the leaking as well. 

As I held Ceci on her side and waited for the storm of doctors and nurses to come flooding back in I had to fight so many emotions to stay calm and reassuring for our girl. But in that moment I wanted to scream, cry and let every curse word I’ve been holding in come flying out of my mouth. I felt so defeated and I know that the rest of Ceci’s medical team did too. 

It only took Neurosurgery another few minutes to make it down the hallway to Ceci’s room and by the time they arrived the surgical dressing was drenched in light brown to orangish drainage and was falling off. 

Again the big concern came to mind. Is Ceci leaking Cerebrospinal Fluid again???

Orthopedics and Neurosurgery called the wound team to Ceci’s room and ordered that the compression dressings and wound vac be replaced to contain the wound and prevent any further infection until we can come up with a game plan as a team. 

Before wound arrived they took additional wound cultures to retest for another infection. 

Then the next round of bad news……

The pediatric team arrived to tell me that Ceci’s blood work this morning was not in normal range and her inflammation marker had more than doubled in 2 days. On top of the worrisome blood indicators her heart rate continued to increase throughout the night and as the morning went on and the pain levels continue to get higher. 

These are huge indicators of a serious infection or medical problem. 

Infectious Disease then joined our party and told us what they were thinking. That Ceci may have a blood infection or bone infection at this point and they were going to meet with all the teams to talk about next steps to try to get Ceci stable.

The worse case scenarios have been discussed with us and I do not think I can even type them up without bursting into tears and hysterics again. I am emotionally drained and very very very worried about Ceci. 

While talking with her team today about all this, I broke down in front of our sweet girl in hard to control sobs. I always try my hardest not to cry around her but my heart is broken and hearing all the horrible possibilities completely beat me down. I felt absolutely awful. It was the 1st time I could not control it long enough to walk out of her room and it scared her even more. She started sobbing too. The doctors were so sweet and understanding and ressured Ceci that they were going to get her better and wouldnt stop fighting either. 

Honestly I do believe this has been the worst day for her so far. Everything and anything that could go wrong, has gone wrong. 

They need a blood culture from her port but we are unable to get any draw back at all now. Normally she does not get blood return but we can get the medication or saline to draw back. 

They tried to TPA (use an enzyme to dissolve clots) her port without any results and we could not get the TPA to draw back, which has not happened before. So there is huge concern about this as well and we were unable to get a blood culture. 

After much discussion with her teams they decided to send Ceci for a CT of her back with contrast. We finished that test around 6 this evening and are waiting on the results. We should have some answers from this in the morning. 

They also decided to send her to Ultrasound to have scans done of her legs, chest, neck and arm to check for a blood clot. Her legs have hurt her so badly yesterday and today so there is an increased concern for DVT (Deep Vein Thrombosis). We finished this testing around 8pm this evening so again we should have results in the morning. 

Right now Ceci is fast asleep and her heart rate is resting at 140. 

I am exhausted myself and will be laying down too, but I had to let you all know what’s going on. I know so many of you love her too and have been walking around with worried hearts. 

I wish I had better news and I wish I could say that I am taking Ceci home to finish healing. But at this point it looks like we are going to be here for a bit longer. 

Please, please, please pray hard and ask our dear Lord to give Ceci some relief from the pain and heal our strong girl so I can finally take her home! 

We are approaching week 6 of our hospital stay and our family is all very worried and heart broken about this all. 

Before I sign off I want to say thank you to everyone that Shared Ceci’s GoFundMe Campaign over the past few days. 

You guys are so amazing and we are so grateful ❤ 

Because of so many caring hearts her Campaign- Caring for Courageous Cecilia Marie has been shared over 700 times and I have received emails that some of her Courageous Crew members have donated to help Ceci and our family during this very difficult time. Thank you for helping us.

We have received such overwhelming support from so many friends, family members and strangers and it has not gone unnoticed. We read every single comment, message, card, text message and appreciation the calls. 

Thank you for reminding Ceci and our family we are not alone. 

I’m going to try to sleep while Ceci is sleeping. 

Be back tomorrow. 

Lots of love and hugs, 

Alexis, Cecilia Marie and our Special Family 

~Spina Bifida Fighters and Survivor~