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 ~