The short-lived good news..

Our second night at Vanderbilt for our EEG went pretty good. Bobby brought dinner up to us and snuggled our sweet girl while mama slept some! She also got to FaceTime big brother 🙂

Fisher slept early on so she woke up around 12:00 am and 2:50 am. She was awake off and on every 15-20 mins until later in the afternoon.

We received the good news around 9:00, that Fisher didn’t have any seizures over those 2 days. They did notice some “small dips in activity” but said it was normal for someone with a chromosome syndrome.

They said someone would be in shortly to remove the probes and get us ready for discharge.

How do they apply the probes? Good question! First they take this green “exfoliant” on an extra large q-tip and scrub the spot where the probe will go. Then they dip the probe in a cream and press on the designated area of the head that was scrubbed. Then they take a piece of thin gauze looking stuff that was soaked in some sort of liquid glue. They placed it on top of the probe and used an air gun to dry it super fast.

*Let me remind you, I explained to them multiple times during our stay, how Fisher has externally sensitive skin and how even in the NICU, her diaper rash burned her skin to where she was blistered and bleeding, requiring light and oxygen therapy. *

How do they remove the probes you ask? Well they take a bottle of acetone and squirt it on the glued on gauze, and peel it/ rub it off. Once they pulled off all of the probes they immediate poured more acetone over her head to wipe off extra glue. No I don’t have a video of this, and it’s probably for the best I don’t.

After everything was said and done, my sweet girl was screaming/crying. That’s when both the tech and I noticed. Her words were “she had some breakdown.” This is where there was too much pressure for too long on her skin and it broke down. You can imagine the sick feeling that swelled in my stomach when I saw my girls head and then heard the tech say, “she wasn’t crying from the breakdown, she was crying bc I just poured acetone in open wounds!” She apologized and then the doctor said this happens sometimes but they’d prescribe a cream for it.

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There were 25 probes and there are about 10 “opened” wounds. They have already started scabbing over, but unfortunately we can’t wash her hair for 48 hours. I tried getting the excess glue and pieces of stranded gauze off but it doesn’t budge. My poor girl is a trooper and staying strong. I know it hurts bc I feel every time she moves her head something’s pressing on one or more spots.

All creamed up

Please Please please pray that she heals quickly. I hate seeing my Fisher girl in pain.

We have several appointments coming up soon (man I feel like I say that in every post.)

We have a follow up for pneumonia with her pediatrician tomorrow along with therapies(OT, FT.). Next week we have her 6 month check up, PT, OT, FT, DT, GI apt, meeting with TEIS, and then my birthday! The next week we have all the same basically, but add in Neuro and Swallow Study!

Thank you again in advance for all of the prayers! We appreciate everyone of them!

8 thoughts on “The short-lived good news..

    1. Bless Fisher and all of y’all!!! There’s nothing worse than having to watch your child in pain!!! Praying for quick healing and going home!!! ❤️🙏❤️🙏❤️

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  1. I’m praying for your Beautiful sweet baby and your family. She is the sweetest gift God has given you. If there is anything you need I’m here.

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