Day 29

Very True ❀

We believe Faith is as STRONG as hope and has more power than Fear ❀

We are getting through day 29 today and I’m happy to report that Ceci is staying stable πŸ™‚

Her pain is losing it’s consistent power and today she has only needed 2 doses of IV morphine since 5 am. We are getting closer to being able to check one thing off the list of necessities that have to be accomplished for me to take out girl home. Moving her to oral pain medication only.

The past week she was getting Morphine every 4 hours, so we are making progress. I can not wait until she doesn’t need it anymore.

Me and our wonderful tech finished helping her with a bed bath and washing her hair shortly ago and now she is sitting at a 35 degree angle in her bed watching The Fosters on her Ipad.

She’s happier today because after being NPO since Thursday, she’s finally able to eat some regular food. Her ileus has improved and the swelling in her poor belly is finally going down. She said she feels the pressure easing up and she was able to eat some fruit loops for breakfast without the severe stomach pain returning. Then a little bit ago she had her favorite- Subway turkey and cheese sandwich with mayo, and again no pain πŸ™‚ Another beautiful step in the right direction!

Yesterday was a good day for Ceci and our family. Dad brought Nicholas and Aiden up to spend the day with us πŸ™‚ And then shorty after Ceci’s older brother Mikey, his sweet girlfriend Kristina and Ceci’s adorable nephew Maxy came to visit too. She was soooo happy to see them all and she fought through the pain and not being able to eat like a champ. She tolerated having the head of the bed up for hours and was smiles from ear to ear. It was a good day. So much better than Saturday.

We had plans today to remove the drainage tube from her back and see how her body and incision tolerated it, but she had an increase of output from it the last 48 hours so Ortho decided to leave it in for another day.

As of now the plan is to remove it from her back tomorrow morning and monitor her pain level and vitals. They will also see if once the drain is removed, if the wound vac on top of the incision begins to produce output. Right now the wound vac is not pulling anything from the top of the wound, because the drain is doing it for us.

If the wound vac begins to produce output, then we know that Ceci will have to continue wearing the wound vac for a bit longer and will need to go home on one, along with more iv antibiotics and more bed rest so that her back will hold together.

Our hopes are that once the drain is removed, the wound vac will continue producing nothing in the drainage canister. If after 24 hours this is the case then we can move to the next step. Wednesday evening or Thursday we would be able to remove the compression dressings and the wound vac all together and place regular gauze and tape to cover it.

If we are able to get to that step, then we will monitor again for output on the dressings and see if there is any sign of her stitches and skin spreading apart again.

If not then I could take her home if she meets all the other requirements as well- Oral pain medication, being able to tolerate sitting in her wheelchair for at least 2 hours, no more tummy pain or headaches.

I know it sounds like a lot but I know our girl can do it!

~ Super Ceci ~

I do want to let everyone know that has been so kind in sending Ceci cheer mail to our house and medical supplies, please don’t worry πŸ™‚ Ceci’s grandma Gluck and her dad have been checking the mail everyday and placing it in Ceci’s room for her return.

Miss Debbie πŸ™‚ I also wanted to let you know, do not worry our post office was very helpful and figured things out ❀

Today was suppose to be my first day back to work since Ceci’s original surgery back in July, and it feels so odd that we are still here.

I was hopeful that all would go well without complication and I would be back at work and Ceci back to school. As of now sissy wont be able to return to a school setting until late October or November and I have taken another 4 weeks off of unpaid leave to make sure our girl has all the support she needs to get back to her base or even better πŸ™‚

It’s going to be hard for our family financially but I know that God has our back and so many amazing people here have made sure that our family is protected.

I know I have said thank you a million times πŸ™‚ But I have to say it again thank you so much everyone ❀ ❀ ❀

www.gofundme.com/supporting-super-ceci

So many amazing people have shared Ceci’s GoFundMe campaign and have offered gifts of love to the campaign so that I can focus on nothing but her healing and our families care.

Because of your love our financial responsibilities for July and most of August have been taken care of. Plus Ceci has many of the medical supplies that she is needing to heal and get better.

Thank you so much dear friends and thank you for being part of Ceci’s Courage Crew πŸ™‚

Well guys its time for us to move Ceci onto her side, so I am going to sign out for now. But we will be back soon.

Continued prayers please for better days ahead, Ceci’s pain to continue to decrease and that the next few days bring nothing but more good news.

Hope everyone has a good night.

Lots of love, hugs and appreciation to you all,

Alexis, Ceci and our Special Family ❀

~Spina Bifida Fighters and Survivor~

Ceci’s Medical Needs Amazon Wish List-

https://www.amazon.com/hz/wishlist/ls/SCU7RSXGDDYR?ref_=wl_share

Ceci’s Dream Wish List for Fun-

https://www.amazon.com/hz/wishlist/ls/SCU7RSXGDDYR?ref_=wl_share

One thought on “Day 29

  1. Gail Miller August 19, 2019 / 7:23 pm

    So glad you’re feeling better praying for good days ahead hope you have a good night

    Liked by 1 person

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