❤ She has the friends part down. Thank you Friends ❤

Last night was a hard restless night. 🤪

Ceci had a very intense spinal headache after surgery and needed a dose of Morphine to help calm it down and allow her to sleep.

She described it as the worst headache she’s ever had in her life and told me and her nurse that it was a 10 on the pain scale. Poor girl was in so much pain but within 5 minutes of getting the medication she was fast asleep and we were thankful.

Ceci’s normal heart rate is between 80-90 but with these repeated surgeries, spinal infections, increased medications and all the bed rest she had developed some Tachycardia. So her heart rate has been between 105-125.

Well we all got super excited because for the first time in over a month her heart rate was back in the upper 80’s and 90’s when she was in post op recovery and when she came back to the room.

But then things went crazy.

Around 9 last night Ceci’s heart rate increased drastically.

We went from 80-90’s then all the way up to the upper 150’s. Of course it caught everyone’s attention and her wonderful pediatric doctors here were in and out of her room to reevaluate her status.

She wasn’t in any pain, she was getting port line fluids and was drinking well, and she wasn’t complaining about shortness of breath.

So they monitored her for another hour or so. But she stayed at that heart rate and began to increase.

So the team decided we needed to give her 2 port line fluid Bolus’s, to see if losing so much fluid from her body in surgery may have over dehydrated her.

They drained around 400 cc’s of this fluid off of her spine. And then once she came back from surgery, she had drained out another 200 cc’s by 10pm.

They gave her 999mls of fluids over 30 minutes twice and thankfully by 2am her heart rate was back down to 118.

Very relieved about it. They were talking about having to do a cardiac work up if her heart rate didn’t slow.

She needed 2 liters of oxygen to keep her above 87 -saturation wise, but finally around 330 am she was stable again and sleeping peacefully.

Around 5 am they were back in to draw more blood work from Ceci so she’s been awake since.

We’re getting ready to order breakfast and try putting the head of her bed up to see if she can tolerate it without another bad headache.

🙂 if she’s doing well Ceci wants to get up in her wheelchair and head to the teen room.

She’s made a friend here that’s been in the hospital almost as long as she’s been here so the girls want to meet in the Teen Room later today to do each other’s nails and watch Stranger Things.

Hopefully it’ll be a boring, uneventful day 😁

Well off to order our girl some breakfast, help her with a bed bath, and get her ready for visits from her school teacher and counselor.

Be back soon.

Lots of Love and Hugs,
Alexis (mom), Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

Caring for Courageous Cecilia Marie:


Cecilia’s Amazon Medical Need Wish List:


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