After much discussion yesterday between Pediatric surgery and Neurosurgery it’s been decided that it would be best for Ceci to have two different surgeries today.
Her port tubing is displaced so Dr. Robertson and IR will go into together to remove her port and be sure to get all the tubing from her chest cavity.
Then they will work to place a new power port in her chest.
Once they are done Dr. Linn will go in and open Ceci’s side to remove the Lumbar shunt that was placed back in October when she had the massive spinal infections.
There’s big concern that with her having a reprogrammable VP shunt in her head and an LP shunt in her spine that her body is draining too much fluids off her brain and spine and that may be what’s causing Ceci to be so dehydrated and why we haven’t been able to wean her off the need of needing port line fluids everyday.
Ceci’s bp has been high the past 2 days, which is new and concerning. So they ordered a cmp, cbc and of course her cross and match and coag for surgery.
Happy to say everything is in normal range.
We’re hoping after surgery and when she’s getting her normal amount of iv fluids again that her BP will come down. High BP is not normal for her.
Please pray for God to guide the surgeons hands and that Ceci’s pain can be controlled after both procedures.
Peds surgery is concerned that removing the port is going to be tricky because she’s had it for 3 years, it’s moved a great amount and it looks like it may be fused to her chest wall 😔
Ceci’s determined to sleep in her own bed tonight after surgery but we’ll have to see how mommas is doing afterwards.
Be back soon with another update.
Lots of love and hugs, Alexis, Cecilia Marie and Our Special Family 💜
Good evening everyone and thank you for coming by tonight.
We hope that everyone is staying healthy and happy. Our family member (my dad-Ceci and the boys papa) that was battling COVID is doing much better thank goodness and looks to have beaten the virus.
We are very glad to be able to say that and thank you all again for sending our family prayers and good thoughts during that difficult time. We were so worried.
We hope none of our family here is battling the same or has a member battling. It is for sure a scary time.
Please comment and let us know ya’ll are alright. Again, we do not have active personal Facebook pages, so this is our only means of communication with all you wonderful people 😊
I want to say thank you for leaving Ceci so many encouraging and uplifting messages the Thursday we went to Iowa City for all her testing. It was a long hard day of testing, but our girl did amazingly as always. She was a heck of a trooper and did not whisper one complaint.
We did not end of getting out of her last test till nearly 5:30pm and back on the road until about 6pm. We were exhausted! And boy did we sleep well that night.
We got the call on Friday and found out the results we have been waiting for, for months now.
It was not all good news, but we got one BIG piece of good news that made us all smile 😊
Ceci’s Bladder is not going to require a massive Bladder Augmentation Surgery that most of the surgeons believed she needed soon!!! Thank you, Jesus!!!
We smiled so big here 😀 and we have been smiling since.
Our girl really needed that win! She has been through so much in the past few years. This type of surgery would have kept Ceci in the hospital for a long time and would have been very risky for sis. We needed some good news in this all.
I had to give you guys the good news before anything else. I had to give you a smile, because I know you take it to the heart for sis just like us.
After all the testing they did on sis last week we found out a lot of important information about her urological and gastrointestinal needs to ensure she will be as healthy as possible and to protect her kidneys from future damage.
She will need another surgery to work on multiple sites at once. It will be a big surgery with multiple surgeons working on her, but less invasive than if they also needed to do the bladder augmentation.
We have discussed the urgency of these big surgeries that will take place on her bladder and bowel and for now we have some time to push it out. After the last 2 years of heartache and pain for Ceci health wise, we want her to have a great summer with our family at home 😊
So as of now we are looking at scheduling her surgery up in our new 2nd home away from home, University of Iowa Stead Family Children’s Hospital in Iowa City in October of this year. She has a 2 week fall break so we will schedule appropriately at that time, so she hopefully will not have to miss school days. After being home tutored for the past 2 years she is very anxious to be back in a school setting with her friends and is ready to start high school in the fall with her peers.
It is still sooo crazy to me that our girl is going to be a freshman in the fall! How did this happen!!!
Next May we will be throwing a big sweet 16 party for her, since we were unable to have a Quinceanera this May, which was hard for us but with Ceci’s health and the pandemic it just was not an option.
I need to get the planning going again. There’s only 339 days until the Saturday we would like to celebrate- May 15, 2021.
Things were put on hold once the pandemic hit. I need to find a big hall at an affordable rate for our sweet girl that will be big enough for her to wheel around in her chair and that is accessible for her all friends that also use chairs 😊
She has picked the Theme of- Under the Sea 😊 And she has been filling up her Pinterest with so many ideas! I feel like I am planning a wedding for our girl, but it will be a super special day for her. I need to find someone to make a big beautiful cake, someone to decorate a hall, a gorgeous dress either in mint or coral and so much more!!!
I would love some suggestions if anyone has any ideas! I love coming to ya’ll with help. Some of the best ideas have came from ya’ll 😀
We are so happy that Ceci will not need a major augmentation surgery in October, but she is dealing with some other issues that have been causing our girl some pain and discomfort.
For the past few weeks sis has been passing kidney stones 😦
In one week she passed 4 kidney stones her at home like a champion and at her appointment in Iowa city a few weeks ago we found out that sis is still dealing with another.
She currently has an 8mm stone in her left kidney.
I still can not believe how strong this girl is! Every time she passed one she would come and report it to me so I could document the size and of course she passed blood too. But then she would just whirl off in her wheelchair, ask for some Tylenol and then go back to making bracelets or painting.
After passing stones of these sizes- all bigger than 6 mm’s- i would have been in the bathroom on the floor. Not our girl! Gosh her strength ❤
So for now we are waiting to see if she will pass this additional stone. If she does not by the time we go back to Iowa City in a few weeks for additional urological testing, they are planning on taking her into the Operating Room to remove the stone and try to prevent any complications.
We could use prayer on this. Prayers that it passes without too much pain and does not cause any complications or infections for sis.
Well dear friends another update to come soon, but it is getting late and I need to finalize Ceci’s infusion for the night and get her to sleep.
Thank you for taking the time to read about our girl and our family.
We’ll be back very soon 🙂
We have a special post coming soon. A few special posts that we can’t wait to share with you all!