Update #2 for this morning.

Things have changed yet again 😥

I asked the orthopedic PA to ask Dr Akeson about the drain having so much output the last few days and also because the fluid today has been all yellow.

She sent him a photo and then within 20 minutes our amazing Neurosurgeon was in her room.

Can you guess what it was?

Yep Cerebral Spinal Fluid 😓😟

She has a leak and the drain has been overdraining her ventricles. That’s why she has had a bad pressure headache when we sit the head of the bed up.

So Dr. Linn (neurosurgery) pulled the back drain out and used 2 sutures to pull that opening together.

He’s hopeful that removing the drain will stop the over draining and will help her feel better.

Of course this brings more issues and worries…….

There’s concern that she could develop a CSF infection, that her back will reopen due to pressure from fluid, that she’ll become symptomatic for shunt failure and other symptoms.

So today and tomorrow we will be watching her closely and go from there.

😭😖😢 Im a little disappointed in myself. I had a gut feeling that she did have a CSF leak the past few weeks.

But when they took her into surgery on Thursday the neuro doctor assisting said he didn’t see any sign of a leak so I went with that.

I will not let my motherly intuition be put on the back burned again.

We know our kids the best and I’m a huge advocate about this, but this time I let someone else convince me otherwise. Keeping my mommy radar on high.

We may have to stay for another week, but we’ll see how she does in the next few days.

Lots of love and hugs,
Alexis, Cecilia Marie and our Special Family 💜

~Spina Bifida Fighters and Survivor ~

Well darn it!

We are back on the downside of healing 😖

I just spoke with orthopedic surgery and they’ve decided that we can not remove ceci’s back drain today. 

She’s continuing to have an increase in draining, 
which means fluid would build up underneath her incision and most likely cause it to reopen again. 

We’re a little confused as to why her drainage is increasing. It slowed down on Thursday evening and Friday morning but started back up by Friday afternoon and hasn’t stopped since. 

We’ll talk to infectious disease about this and see what they think.  Dr Gray said he believes she may have another active seroma under her tissues,  so this may be what’s going on. 

Ceci’s fast asleep.😌 our little fighter is actually snoring away and it’s past 6am. I’m glad she’s able to rest this morning. 

We had a bought of increased lower back pain very early this morning that warranted another dose of iv valium and morphin. I walked out of the restroom and found her crying. She can really use the rest. 

It helps that our hospital room is nice and dark this morning.  There’s thunderstorms working their way across Illinois today. Hoping everyone stays safe out there ❤

Grandma Cindy is going to be coming up to hang out with our girl later today, so that I can make the drive back home for a few hours. I’m out of clean clothes and desperately need to run a load of laundry. 

Also I’d love to pick the boys up from school and have dinner with them. They are missing us both like crazy and they need some mommy time. 

Please pray for safe travels all around as grandma Cindy and I hit I-74 back and forth today. 

Hoping everyone is having a wonderful morning.

Be back soon.

Lots of love and hugs, 
Alexis,  Cecilia Marie and our special family 💜

~Spina Bifida Fighters and Survivor~

Caring for Courageous Cecilia Marie-

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Ceci’s Medical Needs Amazon Wish List-

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Ceci’s Dream Wish List for Fun-

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