Good morning everyone and welcome back to Ceci’s page.
Sorry I was not able to post a full update about sis last night. We were so exhausted once we got back to her room. We both slept well after getting some much needed good news 🙂
On to the good news ❤ ❤ ❤
Surgery went good!!!
Her wonderful orthopedic surgeon did another good clean out and when he explored the site he did not see any additional deep tissue death. He needed to remove some more skin from the edges where we tried to close but not too much. The antibiotics are working! Praise God
Neurosurgery did get a chance to come in and explore the site and another great thing to report 🙂 It looks like she doesn’t have a CSF leak! This is such good news!!! It was one of our biggest concerns so hearing that we have confirmation from neuro that she does not have one gave us such relief.
Once the doctors finished cleaning out the deep wound, he said he released some additional top layers of skin from the sides of her surgical site and was able to close the wound back together. He said he needed to place thicker sutures this time in hopes of getting it to stay together and then they placed several layers of compression dressings along with the wound vac once more- this time on top of the site instead of inside.
He also placed a wound drain to wick away all the fluid collection that is coming from inside the wound. She will have this until at least Tuesday and then we will see if the output is slowing down, if so she can have it removed.
So our girl has lots of tubes and wires coming out from all over.
Dr Akeson said there is still uncertainty about whether or not her wound will stay closed to allow her lower back to heal, but just being able to attempt to close is huge for us! Its closed very tightly but that is where the wound vac and all the compression dressings play a big part.
Dr Akeson said by Wednesday or Thursday of next week, him and his team will attempt to remove the dressings and the wound vac and see how it’s doing. If it is healing she may be able to go home by the end of next week with IV antibiotics and the wound vac and dressings reapplied. If it is showing signs of splitting back apart then we will talk about the Plastic Surgery doctors performing yet another surgery and discuss skin graphing for sis.
But it’s going to heal!!! So we wont even think about that 🙂
For now we are back to the waiting game and working to get Ceci back to being able to sit up again.
She will continue getting her IV antibiotics through her mediport every 8 hours for the next 2 weeks while we work with infectious disease to make sure they are still working. She is also getting iv fluids to help with the urinary tract infection and to ensure that she does not get dehydrated since she is not drinking much.
Also we will be working hard to get her back to healing from the initial spinal fusion surgery. She’s been flat for the past week so she is not tolerating sitting up with the head of the bed up for any period longer than an hour or so. When we try for longer her back starts to spasm up along with her upper legs and it takes a lot to get her back to a pain level of 2 or 3. We have to retrain all these muscles and nerves to understand the new positioning that her spine is in. With her having such a bad curve in her spine almost her entire life, it’s a whole new world for her body to be this straight. But I know with patience and lots of physical therapy it’s going to get so much better for sis.
Ceci and our family can not wait until all these complications are behind us and we can see all the benefits from this big surgery. It’s going to be amazing!
Thank you for continuing to pray for Ceci and our family. I will continue to post for you all as we continue fighting to get her health back and get back to our own special kind of normal 🙂
I know many of our wonderful angels have been sending mail to the house from Ceci’s Medical needs Amazon Wish List and get well cards. I have not had a chance to pick them up, but I wanted you guys to know that they are safe and sitting on little misses bed. You guys are so amazing! She is going to be all smiles when she sees the mountain of cheer mail and the items that we need to care for her.
Also I need to say another huge thank you to our friends that have been taking a moment to share Ceci’s GoFundMe campaign: Caring for Courageous Cecilia Marie-
I was just notified by GoFundMe that her story has been shared 500 times. It hit me how loved this girl truly is 🙂 Thank you for loving her and helping to ensure she has what she needs to heal ❤
We received 2 more special donations from her Courageous Crew yesterday. Thank you very much dear Angels for being so supportive to Ceci and our family. They will help very much, more than I can express.
I have been off of work on unpaid leave since mid-July. Originally before our sweet girl had these serious complications I was scheduled to return to work this coming Monday. But with everything going on we know I will not be returning until at least September. It’s going to be hard -but again I will do ANYTHING to be by her side while she continues to fight strong. She needs me and honestly I need her too. Her strength has helped me keep it all together.
Well I’m going to sign off for now. We have been up since doctor rounding at 5 and Ceci has finally drifted off to sleep again so I’m going to use this time to jump into the shower.
I will be back soon to post more about her day and if anything changes.
Lots of love and hugs,
Alexis, Cecilia Marie and our Special Family ❤
~Spina Bifida Fighters and Survivor~
Cecilia Marie’s Medical Amazon Wish List—