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 πŸ’™

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

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 πŸ’œ

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 πŸ’œ

~Spina Bifida Fighters and Survivor ~

Day 8 and Getting Better πŸ’™

Look who sat up today 😁😁😁

Huge step for our beautiful girl!

Today is much better than yesterday and we are hopeful that tomorrow will be better than today 😊

She wasn’t able to sit in her chair for long because she’s too wide for her chair with her brace on and much taller since her surgery ☺️ but we hope that Numotion can come out in the next day or 2 and help get a better fit.

We’ll need her to be able to fit in her chair to eventually make the long ride home in our van.

I gave our sweetheart girl a manicure πŸ’…for being so brave with her physical therapy goal of moving off the bed into the chair.

😊 she’s such a girlie girl and loves being pampered. She’s looking forward to healing so she can get her hair cut and colored again.

I’m looking forward to it too. It makes her smile so big and that makes me smile.

Ceci’s wonderful orthopedic surgeon- Dr. Akeson came today and changed all the dressings on her back and put water proof sealing tegaderm on everything.

The top portion of her incision looks wonderful. Here’s the top portion uncovered.

The bottom is going to need alot more time and management and we have to be careful with keeping it completely dry and clean, but so far it looks good.

No signs of infection 😁 and she continues to be fever free.

To help manage her pain a bit better we have Ceci on an around the clock pain medication schedule and it seems to be working great.

She’s getting extra strength tylenol every 6 hours, valium every 6 hours and oxycodone every 4. We’re also continuing to use hot packs on her hips and thighs to calm the muscle spasms.

I also went to the local Walmart here in town yesterday and used the little bit of money I had left to get Ceci 2 big, fluffy, comfy, body pillows to help get her adjusted and on her side to relieve the pressure on her back.

I’m glad we’re able to turn her on her side now. When we changed her dressings earlier we noticed that she has some skin breakdown on her lower back 😞 so we’re treating it with some neosporin and are covering it as well.

She’s also continuing to get antibiotics to treat her urinary tract infection.

Honestly she has a lot going on right now and alot of people managing her stay, but I know she’ll get her better and through this all.

This girl is one hell of a fighter!!!

I’m very proud of the strength she’s shown through this very rough medical journey.

I will be the first to say I could never do this.

I’m amazed by her strength and her ability to still smile.

She’s a fighter πŸ’ͺπŸ’ͺπŸ’ͺ

The trauma nurse is coming in soon to pull Ceci’s mediport needle and reaccess her with a fresh needle and set of tubing, so I’m going to sign off for now.

We’ll be back soon.

Lots of love and hugs,

Alexis, Cecilia Marie and our special family πŸ’œ

~Spina Bifida Fighters and Survivor ~

Still amazed by this πŸ₯°

Wish I had Better News

I wish I had better news.

Ceci is not doing well today. I thought she was okay this morning but her pain and nausea has been too much.

She’s been in and out of sleep all day and we did not work with physical or occupational therapy today because she’s too weak, exhausted and in too much pain.

We ordered breakfast but she only had a bite or 2 before she needed zofran and the head of the bed back down. She’s been sipping a drink here or there but not what she needs to be getting into her system.

She refused to order lunch and she’s sleeping again after only being awake for 15 minutes.

Peds surgery is now on her case as well, due to the issues that we are STILL dealing with regarding the opening in her side from her hospital stay back in April and it not closing. Because of this we’re worried about a higher risk of infection to her back. So they will be following her too.

πŸ˜” We discussed the fact that Ceci is going to need ANOTHER surgery πŸ˜”

She’ll need another surgery to close her side off and one to help manage her neurogenic bowel and bladder. It won’t be scheduled until she heals from this thank goodness, but just thinking about it is so darn frustrating!!!

The bigger issue is it’ll be further from home. It sounds like when it is time too schedule these 2 surgical procedures to be done together, we will go up to Luries Hospital of Illinois in Chicago. It’s about a 3 1/2 hour drive one way for us. More distance between our family πŸ˜–

On top of the battle she’s struggling with right now to heal, we found out Cec has another urinary tract infection. So they have started treating her with antibiotics and hope it will also help ease some of these symptoms.

*sigh*……. I’m also frustrated with myself right now. I made one of the biggest rookie mistakes as a momma of a teen that needs a little extra help with lifting and that sorts due to her paraplegia, and I hurt myself!

I was trying to move her across the bed gently and did not lift correctly and I’ve pulled something in my back πŸ€•

As you can imagine, that’s making things a bit harder. I still can’t believe I did that! So I’ve been trying to ice myself as well in between her naps and im taking ibuprofen. But my sciatic nerve is very angry and causing some ruckus.

On a brighter note ❀

I want to thank everyone that has been sharing our journey and our strong girl with family, friends and even strangers asking for prayers and support.

The outpouring of love and support has been tremendous and reading the comments of love and encouragement has been uplifting for Ceci and our family. Thank you πŸ’“

😊 I also received a report from home today from ceci’s little brothers Aiden and Nick, that Ceci has a pile of cheer mail on her desk at home waiting for her.

That brought a smile across her face when she was awake and reminded her that she has her Courage Crew cheering her on.

She’s also been recieving some sweet E-Cards here the past few days as well. ❀❀❀ You guys rock!

I’m going to sign off for now but I’ll update again soon hopefully with a much better post regarding Ceci. It’s so hard seeing her like this.

Please pray for some better hours ahead.

Be back soon.

Lots of love and hugs,
Alexis, Cecilia Marie and our special family πŸ’œ

~Spina Bifida Fighters and Survivor ~

Cheer mail address for sis:

Cecilia Marie
915 8th street
Rock Island, IL 61201

Better Morning for Sis

Last night was a very rough night for Ceci but this morning is going better.

She had some breakthrough pain that hit a high of 7 on the pain scale but we managed to get get back to 3 today.

Much better for sure!

Right now we’re waiting for the peds doctors to come around and then we’ll be working hard on getting Ceci moving a bit more with physical and occupational therapy.

We’ve ordered some breakfast and the tech is going to help me give her a bed bath and get her dressed in loose fitting pants and her compression tank top so we can also get her into her back brace.

We also will be changing her back dressing today and taking a look at her incision to make sure everything is still closed up and sealed tightly.

It’ll be the first time I see the entire incision. Honestly I’m a little scared. Poor girls incision is so long 😞

Well guys it’s going to be a long, busy morning for sis so I’m going to go for now.

But we’ll be back later this afternoon with another update on her progress and her pain level.

I just wanted to let you all know she’s doing much better this morning ❀

Lots of love and hugs,

Alexis, Cecilia Marie and our special family πŸ’œ

Huge Step for Our Girl

Ceci has been moved off the Pediatric Critical Care floor to the General pediatric floor!

This is very exciting for us πŸ’“ This means that She’s much closer to going home to recover.

We’re day 6 and she’s doing much better than the past few days.

She tolerated having her epidural turned off yesterday and ended up getting it disconnected and removed yesterday evening.

She’s still in and out of sleep throughout the day but she’s managing much better with just oral pain medications, heat packs, and valium to help with muscle spasms in her hips and upper legs.

At this time they believe the spasms are from her muscles trying to get use to the new dramatic way her muscles are sitting.

For so long everything was scrunched together on one side and on the other side are muscles were being stretched to the max.

They hope with time and physical therapy they will slow and eventually diminish.

Today has been a resting day for our girl. Her body is working hard to heal so Cindy said she’s been sleeping alot.

We didn’t get her sitting up in the brace today, but that’s okay because tomorrow physical and occupational therapy will be here pushing her hard.

The plan is to try to get her up, dressed, into her back brace and see if she can transfer herself to her wheelchair while continuing to manage the pain via oral pain medication.

This is the big goal she needs to accomplish before she can go home.

Due to her surgical incision being so long, I won’t be able to lift her like I normally do around her trunk and we aren’t allowed to use her ceiling hoyer lift either until a few months post surgery.

So the only way she can safely transfer is with minimal assistance and trying a transfer board.

Right now this seems to be a fear for sis. So tomorrow will be a hard day for her. She’ll need our prayers and encouragement πŸ’œ

Yesterday Ceci’s wonderful adopted grandma miss Cindy came here to Peoria and spent the night with sis.

She loves when they get a chance to be together and I’m very appreciative that I have someone I trust enough to take a step away for a little bit to go home and see our boys.

We spent the day enjoying each other’s company and getting things prepared for school this Friday.

Yep, the kids start school on Friday 😁 My kiddos go year round so they have a much earlier start.

The tricky part is that all 3 kids are going to be going to different schools this year. So I’m still trying to figure out the pick up situation and juggling little miss being here and then home. But we’ll get it down.

The boys are missing their sissy like crazy!

We can’t wait for us all to get together again.

Well Ceci just woke up so we’re going to watch some episodes of Stranger Things and The Fosters together, and try to get her to eat some Dinner.

We hope everyone’s having a good weekend.

Thank you all for your continued support.

Be back soon.

Lots of love and hugs,

Alexis, Cecilia Marie and our special family πŸ’œ

~ Spina Bifida Fighters and Survivor ~

We’re Getting There πŸ¦Έβ€β™€οΈ

This girl is fighting so strong!

Day 4 of this admission and she’s doing better than any of us expected for such a big surgical procedure.

She lasted 3 hours in this brace today, leaning against pillows and actually fell asleep in it.

I’ve been sitting in this stool in the picture almost 24/7 to help calm her and to be honest it’s been nice 😊

With her being a teen, I don’t get many chances to kiss this sweet girl anymore or rub her head to calm her and this week I’ve been able to. Can definitely tell I’m a mom to a teen.

The brace seems to help ceci’s back muscles by adding the support she doesn’t have yet but it is difficult to get on. Poor girl cries each time we have to put it on.

We have to log roll here side to side and right now that’s a lot of pain and discomfort for her.

We’re hoping as she heals this will become a much easier process on her. The orthopedic doctor does not want her bending, lifting anything or twisting her body until her body has time to heal. So she’s a total assist right now. It’s taking 2 people to help care for her.

The plan over the weekend is to allow her to rest and continue to try and find the right oral pain medications to control her pain and allow us to work more on sitting up and moving.

They are going to try and stop her epidural tomorrow and see if she can tolerate it.

If she can tolerate just oral meds until about 1pm, they will pull her epidural which will be a big step for momma.

Please pray for good results with this test in the morning.

Ceci is looking forward to tomorrow 😌

Her adopted grandma miss Cindy is coming to spend the day and night with her.

Lol, she loves me but says she needs a mom break. So when grandma gets here tomorrow I’ll be making the drive back home to spend the day with our boys and do some laundry.

Very grateful for miss Cindy. It’s hard for me to leave Ceci’s side when she’s in the hospital but Cindy is an amazing RN and friend 😊 so it makes leaving her much easier.

Ceci got a nice visit today that made today so much better πŸ’™

Ceci and nicky James fishing.
Ceci and Aiden playing go fish.
Ceci and daddy playing Yahtzee. 😁 she kicked his butt!

Dad and her little brothers Aiden and Nicholas came to spend the evening with her.

They ate chocolate together and played games. Ceci even beat her dad in Yahtzee, one of her favorite games.

It was so nice seeing our guys. It’s hard for our family when we’re apart like this.

The boys miss Ceci like heck! But know she’s here to get better and that she’ll be home soon.

Well guys the staff gave ceci some pain medication a little bit ago and she’s resting peacefully now so I’m going to lay down myself.

We hope everyone is having a good beginning of the weekend.

Thank you for all the continued support and love that everyone has shown Ceci and our family.

Be back soon.

Lots of love and hugs to you all,

Alexis, Cecilia Marie and our special family πŸ’œ

~ Spina bifida Fighters and Survivor ~

Day 3- Scoli surgery

We are in day 3 of this hospital stay for Ceci, for her major spinal fusion surgery and this afternoon is better compared to early this morning.

Around midnight last night ceci’s pain was around a 7 or 8.

Her epidural decided to give us some issues and it took the nurse about 20 minutes to get it restored and boy did we see how much she needs this right now.😭

We had to dose her with 12 mics of Fentanyl, iv valium and cover her in hot packs to get her to stop crying and allow the epidural to kick back in.

We did not get very much sleep but she’s been drifting in and out again today.

Good news in the midst of all the pain, ceci has been moved out of the intensive care unit and has been allowed to go across the hall to the intermediate side.

This is good! Her stats have been holding steady and no fever 😁

She is still on monitors, has a back drain in her spine draining the excess blood, has the epidural and will be monitored closely but moving out of the “fish bowl” is wonderful!

If she continues to make improvements she may get to go to the general pediatric floor either over the weekend or Monday.

She is happier today. That’s because for the first time in days they have allowed her to eat some real food.

Ceci had some bites of a cheese quesadilla and a few bites of vanilla ice cram and chocolate cake.

You know our girl 😊😊😊 her favorite thing in the whole wide world is chocolate! So as soon as she was given the okay to start eating she had momma looking for anything chocolate. 🍫

Not too long ago the brace guy came by to drop off Ceci’s new support brace she’ll have to wear until her back heals.

And boy is it bigger than I imagined.

She’ll wear a stretch tank top under the brace and then clothing over it.

I didn’t even think about the fact that she’s going to need different clothing ☹

Her shirts are definitely not going to fit over her new brace and I’m thinking comfy dresses are going to be best since her incision is from below her neck to her bottom and having pants rubbing would be too much.

We are going to need to do some clothing shopping for sis.

Well guys going to let Ceci get a little bit of rest.

But we’ll be back soon.

Thank you for keeping our girl in your thoughts and prayers.

Lots of love and hugs,

Alexis, Cecilia Marie and our special family πŸ’œ

~Spina Bifida Fighters and Survivor ~

😁 per kind request, cards can be sent to our home for Ceci and we will delivery them to her as dad and family comes up:

Cecilia Marie

915 8th street

Rock Island, IL 61201