It’s An Up and Then Down Kind of Day

As of 2:45pm today, we’re on the the down part of this day 😔

Around 8:30 this morning Ceci was feeling good and was in total agreement that we should get her ready for the day and out of bed.

I’m not going to lie, this was a difficult task for just me and her.

Ceci can not assist in most of her care right now so this momma is doing everything and on top of my own stupid pulled back muscle and sciatic pain 😰

So it took us a bit longer, nearly 2 hours to give her a bed bath, wash her hair in bed, change out her Foley catheter and tubing, change her ostomy bag that is still covering the hole in her side that hasn’t healed, change all her back dressings from her incision site, change the dressings and clean her back where she has the skin tears, get her back brace on and then fight to get her into her wheelchair 😳 It wore us both out!

And I think that played a part in her not doing good this afternoon.

She stayed up in her brace and wheelchair for about 3 hours before she started not looking well.

She started running a fever 99.9, having dizziness and nausea and then her head was hurting pretty bad.

I gave her, her next dose of tylenol a little bit earlier and then I worked to get her back into bed and out of the brace.

Once she was laying down in bed the awful back and leg muscle spasms started. Her left leg continues to be the worse of the two. She was rating the pain as a 6.

I tried rubbing her thighs to see if it would help and I could feel how tight her muscles are pulling. Her legs get so hard and I know it has to be so painful because her eyes fill with tears 😥

I ended up elevating her legs up with a pillow and used the remote setting on her bed. I also covered her with heat packs and that seemed to finally bring relief and she passed out.

Her temperature is back down to 98.9 and she’s resting well- thank goodness for no touch forehead thermometers.

I’ve been sitting next to her bedside watching her sleep and praying that this will all get better soon.

Please continue to pray for better days to be more abundant than the bad days.

She’s tired and I understand why.

Be back soon.

Lots of love and hugs,

Alexis, Cecilia Marie and our special Family ❤

~Spina Bifida Fighters and Survivor ~

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4 thoughts on “It’s An Up and Then Down Kind of Day

  1. Gail Lovorn August 6, 2019 / 4:22 pm

    Hey Alexis,

    Has she ever tried a weighted blanket? It might help her pain and helps to settle you down to rest. Just a thought.

    Hang in there! Better days are coming!


    Sent from my iPhone


    Liked by 1 person

    • Ceci's Courage Crew August 7, 2019 / 6:10 pm

      Hi miss Gail 😊

      We haven’t tried that. I do wonder if it would help. That’s a good idea.


  2. Shayne Frankel August 6, 2019 / 4:16 pm

    I’m exhausted just reading what you and Ceci went through this morning to get her into her brace and upright. Can’t even begin to imagine what her body feels like, and it’s still trying to figure out where everything goes after the “straightening” surgery! What a hero that she managed 3 hours in the brace and chair. I sure hope you have been offered some in-home OT and PT to get both of you through this healing/readjusting period! Loving hugs Shayne

    Liked by 1 person

    • Ceci's Courage Crew August 7, 2019 / 6:09 pm

      ❤ thank you for always being so supportive Shayne.

      We head back to see her orthopedic surgeon Wednesday, then I think he’ll be writing orders for therapy.

      She’s going to need lots of physical therapy to get her strength built up. But I know she’ll be able to do it 🥰


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