😁 I have great news to share with you all.
Ceci’s spinal cultures have grown for over 24 hours now and there’s no growth so far!!!
This is huge!
The last 3 times they grew within hours, so hearing that we made it past the 24 hour mark and so far they’re negative, is making us very hopeful that we’re FINALLY seeing some light at the end of the tunnel ❤❤❤
They will have final test results late Friday or Saturday (staying positive) but I know you’d all be as excited as Ceci and I am about 24 hour results.
Ceci’s feeling good this morning.
Her pain is well controlled with Tylenol,the lidocaine patch, and the drain – keeping the fluids draining out of her body. She’s up in her wheelchair rolling the halls with her friend, that is also a patient here.
I hate that both of the girls have been patients here for so long, but I am grateful that they have each other to lean on.
Patients aren’t allowed to enter each other’s rooms but they have been walking/ rolling the halls together, painting each other’s nails in the activity room, and her friend sits in her doorway in the evening (when ceci is in bed resting) and the girls have long talks about hospital life until it’s time to sleep.
😊 I feel like God brought these girls together during this difficult and dark time. Ceci’s light was becoming dim and our girl was falling into depression from repeated bad news and pain.
Since these girls met a few weeks ago and have become closer, ceci’s as bright and smiley as ever 😁 so thankful for this gift 💜
We talked with all Ceci’s doctors this morning and they are all agreeable on what’s planned next for our girl.
Tuesday Ceci’s on the Surgery schedule to go back in for another surgery ( surgery # 61/6 for this admission) to remove the drain she has now and place an internal shunt into her spine to continue draining the fluid off her back.
We think this is the only way that she’s going to heal, keep her back from busting back open from pressures again and control the pain.
They had to remove so much fluid from her spine in surgery and then within 6 hours of coming out of surgery her external drain had drained another 350 mls. So much!
It continued draining around 100 mls every couple hours so we had to slow it. It was dehydrating her from losing so much from her body that her heart rate was in the 150’s and it was making her heart work too hard.
So we took the drain off of suction and are just having the fluid drain per gravity. Her vitals have been stable ever since and the fluid has slowed down.
We’ve been able to slow her iv fluids now too.
Ceci’s currently working with her wonderful Hospital School Teacher- mrs Lauren, so I’m going to use this time to jump into the shower and grab another cup of coffee.
We hope that everyone’s having a great Thursday morning.
We’ll be back later with some thank yous and cheer mail shout outs 🥰
Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family 💜
~Spina Bifida Fighters and Survivor ~
Caring for Courageous Cecilia Marie-