Day 9- Spinal Fusion status

This girl! She’s so amazing to me ❤

She was sitting up against the bed in her back brace, for about 2 full hours!

She played a game of Yahtzee with me, watched a little Stranger Things (her favorite), facetimed one of her Besties miss Eva, made this super big batch of slime and ate a few bites of lunch all before she asked for it to be removed and laid back down for a nap.

That’s one hell of a fighter!

The craziest part was that she dealt with a difficult and early morning of pain that shot her pain level back up to a 7 😞 and she still played along with getting up and moving.

Early this morning we weren’t able to get her pain back down with the medication schedule we’ve been using, so she needed a dose of fentanyl to calm her back and the muscle spasms from getting out of the position her body had been in for nearby years.

After receiving the Fentanyl she took an hour nap and then slowly perked back up and said she was ready to work.

I just removed the brace about 15 minutes ago and she’s sleeping again. Her body needs much more rest at this time and her medications have her sleeping as well.

The team gave her some zofran before lunch arrived to see if that would help with the nausea, but unfortunately it didn’t do much. She ate 2 French fries and one bite of her hamburger and called it quits.

She didn’t eat dinner last night, no breakfast this morning and the very minimum this afternoon so the CHOI peds team is watching her closely.

Nutrition has also gotten involved and have put high protein shakes on her chart to see if we can get her to drink at least one a day until she’s back to eating. So far she hasn’t.

Makes me concerned because normally she’s just like her momma and loves food.

Her all time favorite thing in the world is chocolate and she’s even turned that down. 😱 not good.

So we’ll come to work on this.

This afternoon Ceci’s little brothers Nicky and Aiden have their unpack their backpack nights at their separate schools.

Dad is unable to take the kiddos due to work and I take them every year so ceci and I talked and I’m going to run home this evening to take the boys to their events and spend some time with them and then I’m heading back before night.

It’s an hour and a half drive to and them from home, so I’ll be doing some tired driving but I’d do anything for my babies 💙

Thankfully the hospital is able to help with $20 in gas vouchers so that takes away some of our expense 🙂

Our friends in Child Life are going to be coming in to check on sis while I’m back in Rock Island this evening and she has some of her favorite nurses from the hospital working tonight so that’s a big plus!

Of course I get nervous as heck leaving her for a few hours since I don’t leave her when she’s in the hospital, but then she reminds me that she’s a teen and she’ll be just fine 😏- oh my 14 year old Ceci.

Little miss did ask me to pick up her cheer mail from home, so she can open it this evening. It really helps distract her and eases her home sickness.

So I made sure to set an alarm on my phone to remind my crazy, forgetful brain not to forget!

I swear mommy brain is not restricted to newborn moms. It comes in waves no matter what age your kids are.

For sure!

Wound care is coming in shortly to see Ceci. We’re still dealing with an ulcer on her side from the cecostomy hole and she’s started getting some skin tears on her back so she’s going to show me what to use and how to treat it and prevent infection.

I’m going to try to nap while she is, so I’m ready to drive in a few hours.

We hope everyone’s having a good day.

Thank you to our sweet friends cheering up ceci’s days with E-cards, cheer mail, phone calls and text messages.

I almost forgot Ceci is able to have visitors now that she’s on the general pediatric floor and out of critical care.

If you’ve visited her here before you will still be on her visitors list and can come anytime before 8pm 😁

She’s a frequent flier on the peds floors so thankfully they just keep her old visitor list and we add to it.

Just let me know if you have any questions.

Oh yes, we need to send out a big thank you to Miss Christina and her sweet family back home, for gifting a donation of love to help our family while I’m on unpaid leave from work for another month and Ceci is in the hospital.

Thank you dear friends 💜

Financially we are in a very bad place with our regular monthly home bills, medical supply costs and all other expenses related to our sweet girl having a very bad year.

With me taking a month of unpaid medical leave back in April to care for our sweet angel, it got very hard for us and we fell behind.

And I have again taken another month of unpaid leave due to this surgery. But like I said I will do anything for my kids and right now Ceci needs me by her side.

I know things will eventually get much better. We just need to stay positive and have faith that God has a plan.

One last thing before I sign out that I keep forgetting to post.

We had a friend ask if we could post an Amazon wish list of medical items and necessities that we purchase out of pocket monthly for Ceci or that we could use to assist in her care right now.

Here’s the list:

Thank you for inquiring.

Well a bottle of Biofreeze is calling my name so I’m off for now.

Be back soon.

Lots of love and hugs,

Alexis, Cecilia Marie and our special family 💜

~Spina Bifida Fighters and Survivor ~