Good evening dear friends and thank you for stopping back by to check on Cecilia.
Today has been a day of ups and downs.
Ceci was in a lot of pain this morning from the docs moving her around and ended up needing some Morphin to calm the pain. Once they dosed her she fell asleep and was able to rest comfortably for a few hours.
When she did wake up, she was feeling much better and tolerated having the head of her bed at a 35 degree angle. She was very talkative 🙂 and spent an hour working on friendship bracelets again for the wonderful staff here at Children’s Hospital of Illinois and for friends.
It was a good few hours and I found myself able to relax a little, something I have not been able to do since Ceci was taken by Ambulance on Saturday. She was happy and so was I.
She ate a good lunch- Chicken strips, french fries and a few bites of her favorite chocolate cake. Then she napped again.
We were working on helping her with a bed bath when things got crumby.
Ceci’s wound vac sprang a air leak in the seal and it was shutting down. So we had to roll her to her side and work on finding the break in the dressings. Poor girl, any movement right now seems to set all the pain back in motion, so having to roll her back and forth from her side to her back was too much 😦
Her nurse and I tried to fix the seal but after many attempts we ended up needing to call the Wound Team and they had to come up to help us reseal her site.
It took us about 45 minutes to get her wound sealed again and of course as the time passed and we moved her more her pain was intolerable again. We ended up having to give her another dose of Morphin to stop the pain and calm Ceci.
Again she slept.
She just woke up about 45 minutes ago and once again she is feeling better 🙂 So it has been a major up and then down kind of day.
We are working with infectious disease and we know now that Ceci is fighting 3 different types of Bacterial infections. She is getting heavy antibiotics- Clindamycin and Cefepime and will need them for a few more weeks.
Tomorrow around 5pm Ceci will be heading back into the 3rd surgery she has had in less then 30 days 😦
Dr Akeson will be removing the wound vac and packing in the operating room, to see if the infection is getting better with the Antibiotic regimen she has been on, or if it is continuing to spread and kill off more tissues. Neurosurgery will also be joining him to take a look at her wound and make sure she is not leaking CSF.
We are back to waiting to know what is next.
All 3 of the teams caring for her are at a stand still until we can see what her back looks like tomorrow.
Best case scenario that we are all hoping and praying for: Is that Ceci’s back is looking better with all the antibiotics and the wound vac sucking out the infections. If he goes in and see that the tissue death has stopped, he will do a thorough clean out of her back and attempt to close her back up. If she has enough skin left to close it he will and then reinforce the closure with another wound vac that will keep her back sealed off and closed for a month and see how it does. She will get to go home probably this weekend, but on IV medications and the need of Visiting nurse home visits to help me change dressings and administer all the IV antibiotics. She will also be bed bound for a while.
I really do not want to get into what will happen if this is not the case or if a CSF leak is detected 😦 So I am not going to get into it yet. I am trying my best to think positively.
Best Case Scenario is going to happen! It is!!! It Is!!!
We had to keep the faith ❤
Please pray that this is what happens for our girl. I know so many of you have prayer relentlessly since she was readmitted, and our prayers and good thoughts have powers that no one can see. Courage Crew we got this!
Well Ceci’s dinner just got here so I am going to go for now.
But we will be back tomorrow, hopefully with nothing but good news.
Thank you all for continuing to keep Ceci close to your heart and on your mind.
Also a huge thank you to the Angels out here that have helped our family keep our heads above the drowning line, by sharing Ceci’s Go Fund Me Campaign and who have donated to help our family with our ever growing financial burdens from my time away from work.
I can not say thank you enough for all the love and support we have received. This is definitely the hardest medical battle that Ceci and our family has faced and we are thankful for the continued help we are receiving ❤ ❤ ❤
We will be back soon dear friends.
Lots of Love and hugs,
Alexis, Cecilia Marie and our Special Family ❤
~Spina Bifida Fighters and Survivor~