Good morning dear followers, friends and family.
I wish that I had better news on our girl but unfortunately Ceci is still ill. She has not been feeling well since Monday and whatever is going on, is really keeping our girl down.
She had another night of headaches, coughing and restlessness. Her sweet Auntie Kathleen went out and got her a Vick’s Vaporizer for her bedroom and it did seem to help her cough for a bit. But by 3 am we were back up due to her head hurting.
She fell asleep again just a bit ago when I ran her little brothers to school and is continuing to sleep. She has been out of school all week long, which is hard on her since this girl LOVES to be in school. I keep reassuring her that she needs to rest and we can make up anything that she’s missed when she returns. But if ya’ll know Ceci missing school is not fun for her.
Other 13 year olds would love to have a day away from class, but not our girl. To her being in school is part of being a typical teenager and she really enjoys it because it helps distract her from all the non-typical teenage things she has to go through with her health. School is something that Ceci yearns to have everyday and this past school year she has missed more days than she ever has due to not being healthy enough to attend daily.
It has really been a hard year for this girl and it kills me that she has had to go through all this. Repeated infections with multiple hospitalizations for port line antibiotics and surgeries, Migraines from her shunt and hydrocephalus, we had no other choice but to close off her Urinary Stoma due to all the issues and pain, this tibia fracture, and of course common illnesses from her immune system being too exhausted to fight viruses and infections off.
I remember when I started Ceci’s Carepage all those years ago when Ceci was 1, and one of my wishes for her was that we could go surgery and hospital stay free- for 6 months. 6 months was all I prayed for. I do not believe that we ever made it that long but boy has things changed since then. If we could go at least 2 months now, I would be more than grateful to our Lord.
I just wish this little girl would get the much needed break that she needs and deserves. We will continue to pray on this for sure and I hope that you will all join me in this.b If you are not one for prayers, we understand 🙂 But please consider being one of her Good Thought Warriors and send up positive vibes for our Fighter ❤ ❤ ❤
Now we are going to talk about Ceci’s Spinal Fusion Surgery Scheduled on April 23rd
We know that most of you wonderful followers have been with us since Ceci was very small. And most of the you know that we have been trying to get Ceci’s scoliosis under control since she was about 4 with no luck.
We have done every brace imaginable to try to prevent the progression, done intense stretching and PT and even discussed early rod placement when she was 5.
Nothing seems to stop the progression and it started to become painful for Ceci to try to. So we made the decision to push off the surgery as long as possible and to stop bracing and all the other treatments that she could not tolerate anymore.
I’m thankful that we did make it until Ceci grew into a beautiful 13 year old teen but of course it’s hard coming to the realization that now is the time.
After reviewing her most current scans back in September of last year she made the decision that it was time. Yep our girl spoke up and voiced that she could no longer tolerate the ongoing pain in her sides, hips and back and that we needed to finally put a plan in motion to try to reduce the curve from both the Scoliosis and Lordosis.
No one wants to go through surgery and a surgery this big of course. So once Ceci told me and her orthopedic surgeon that it was time, we knew it was needed.
So here we are. She is scheduled up at Children’s Hospital of Illinois in Peoria to have this Fusion surgery on Tuesday, April 23rd.
We had her pre-operative surgery appointment on Wednesday and this is what we learned:
Ceci’s surgery will take 6-8 hours to complete and she will have 2 of the best Pediatric Orthopedic Surgeons in our area in the operating room working on our girl.
Her doctor explained to Ceci and I that they will have to use a traction device to stabilize her spine and head during surgery so they will begin here by using a local anesthetic to place the pins and prep her for the procedure. They may need to cut some of her beautiful hair down and he wanted her to know why she had 2 other incisions at these sites.
I have been told that she will need 2-4 units of blood during her procedure and may need more as she recovers. So I have donated a unit for our girl since I am a match, her dad will be donating this Saturday- since he is also a match, and we have some wonderful friends and family reaching out to donate the remaining units needed.
Most of you know that I work for our local blood bank and we also cater for the greater Peoria Area so knowing that we have amazing staff helping us collect this blood and provide it for Ceci means so much to me. Just makes working for the Blood Center much more rewarding to me ❤
If you are not a blood donor be sure to consider it. You never know when your family will need it.
During surgery they plan on working on Ceci’s spine from the Thoracic area all the way down to her pelvic bone. As of now her curve in her lower Lumbar are pulling up so much that her hips are pulled up intensely. They are going to do the best to get the pull to release so that she is no longer suffering from having her hip bone rubbing against the bottom of her rib cage.
Here is an example of the fusion process:
Ceci will have to have hardware all the way down and they will use screws to keep her hips fused as well.
She will require bone grafting because of her history with the large Syrinx that was found on her spinal cord years ago. They had to operate several times to remove the CSF filled sac and give her spinal cord relief. That was another surgery that we were not prepared for and left our sweet girl in the ICU for over a month.
I’m not sure if you all remember but after 4 surgeries she ended up in isolation with Meningitis and was fighting to survive. During the last surgery, they ended up having to remove some of her Lumbar bone because they could not get full access to the sac. So this makes it a bit trickier on the surgeons this time around.
We are praying so very hard for an infection free surgery. Anyone having this procedure has about a 1% chance of infection but with kiddos like Ceci the risk raises to about a 5-10% chance.
Another possibility is that once all the screw, rods and metal is placed and the swelling sets in, the surgeons will not have enough back skin to close her incision. If this happens they will also have to do Skin Grafting. They will have to cut her back skin at the hips to allow her back to close all the way and then they will do grafting at the hips.
The biggest challenge after surgery is keeping Ceci comfortable and the pain at a tolerable level. So her doctor will be ordering for her to have an Epidural placed as well before she wakes up so we can keep the pain dulled.
If everything goes as planned Ceci will spend a week to 2 weeks at Children’s hospital and then can come home to continue to heal at home. She will need around the clock care for the 1st month so I have taken a month long unpaid leave to be there for my girl.
Before she leaves she will be fitted for a new brace that she will need to wear for at least 3 months during her recovery. Doctor said her recovery time will be about 3 months long and we will have to be especially careful during this time to reduce any chance of complication. Thankfully I have learned so much during my 13 + years of being Ceci’s momma and primary care giver. I swear I could probably take the RN certification test and pass with flying colors at this time.
If you would have told me 13 years ago that I would know how to care and manage a PIC line, Medical port, know how to place and care for a foley catheter, manage a Cecostomy system, collect specimens and manage wounds without schooling for it-i would have never believed you.
Caring for Ceci has taught me so much and I appreciate the ability to care for her the best that i can 🙂 Momma Nurse here and proud of it.
One good bit of information that made Ceci Super happy about the entire thing, was that Doctor told her that swimming would be amazing therapy for her after this surgery. He told her that if all goes well, she should be able to get back into a pool by the end of June 😀 He said that being in the pool would give her a chance to be weightless and allow her back to heal better. We loved hearing that.
Last year we were able to get the kiddos a nice sized Coleman above ground pool and her amazing Auntie got her a Handicap pool lift to get her in and out safely. It was the biggest highlight for us and Ceci was over the moon happy about being able to swim at home. This year we will need to look into either getting a sand filter pump or a salt water pump to make sure it’s the cleanest and safest for her. But then we will be good to go. I cant wait to give her back some happiness with our pool.
Anyone have any recommendations for pumps?
With this surgery happening soon, Ceci was bummed because she will not be able to go to Spina Bifida Camp this year. It will be the 1st time in 6 years that she cant go. But the pool makes it a bit better 🙂 Of course i told her that she can have her friends come over as much as she wants this summer too, to keep her company that made her smile.
Well guys it’s time for me to sign off for now.
Hehehe sorry about the massive update, but i wanted you all to know whats coming on Ceci’s medical journey.
If you guys have any questions please always feel free to email me at email@example.com, comment on this post, or shoot me an email from our contact page here.
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Our Facebook Prayer page will be getting permanently deleted on April 22nd- a day before her surgery. So remember you will find us here form now on 🙂
Be back soon with another post and more photos of little miss.
Have a wonderful day everyone ❤
Lots of love and hugs
Alexis, Ceci and our family
~Spina Bifida Fighters and Survivor~