Good afternoon dearest friends and welcome back to our families page.
Boy do I feel much better than the last time I posted an update.
Last week was rough.
I was fighting a double ear infection, laryngitis and a sinus infection and we made trips back and forth to Children’s Hospital of Illinois both Monday and Thursday for sis’s appointments and testing.
I’m feeling much better this afternoon and wanted to be sure to post about our girl for you all.
Ceci is doing much better today. We received confirmation from her Renal Ultrasound performed on Monday, that she passed her Kidney stone.
Thank you Jesus!!! 🙏🙏🙏
It has been causing her so much pain and nausea that her nights were getting harder.
We were up at least 2-3 times a night changing catheters, administering pain medication and dosing with extra pyridum to try to calm her bladder.
There was a few times over the past 2 weeks that I was worried we were going to have to head back to the Emergency room for intervention. So you can understand how grateful we are knowing that it’s passed and at this time they are not finding anymore masses on scan.
Another issue we discussed at her appointment with Neurosurgery was her migraines she’s continuing to have on and off since we came home in October.
Neurosurgery changed her vp shunt setting to 1.5 and we’ve almost completely weaned her off of the Gabapentin. We’re hoping this will help. If not then they’ll add in Topimax to her medication list to see if we can get them under control.
Sis is still on so many medications throughout the day, so we’re trying to cut some of the ones they don’t believe are absolutely necessary but so far we’re hitting some bumps.
We took Ceci completely off the Baclofen 10 mg about 2 week’s ago. But the team decided to restart her back on it last week because her bladder wasn’t cooperating after we discontinued it.
Her body still needs time to heal and recuperate from this past year. It’s been too much. And that’s something me and her team has been going around and around with lately.
Thursday we had a long discussion about yet another series of surgeries Ceci needs.
Her side wound from her cecostomy tube’s balloon ripping through her side back in April from the flu, is still causing Cec alot of pain and problems that we are trying to manage everyday with ostomy supplies and creams. It’s a constant battle and a painful one 😭
Ceci’s pediatric surgeon was hopeful that the wound would close on its own but it hasn’t happened and they don’t believe it will because it’s been over 7 months.
So Ceci needs a big reconstructive surgery on her intestines and right side. It will be another bigger procedure that will include removing her LP shunt, opening her side, moving her intestine away from her abdomen wall, and using a skin flap to close.
While they are operating on her abdomen they want to also perform a bladder augmentation on Ceci’s bladder and also do an operation to place a Supapubic catheter into her bladder, to try to lessen her infections and pain.
Which brings us to what else we found out last week.
Ceci has been fighting another awful pseudomonas infection in her bladder 😞 she’s had it for over 2 weeks and because Illinois Medicaid fought us- regarding approval for her antibiotic. She’s had it longer than necessary.
At first they only approved half of the 10 day dosages but we found out today, that her wonderful peds office got the second half approved today. So I’m hoping that by early next week sis will be feeling much better.
The last few days she’s had traces of blood in her Foley bag and I’m sure it’s because of the length of this infection.
The surgeons had brought up bringing Ceci into the hospital again in December for this next big abdominal surgery, but I refused.
She’s missed so many birthdays and Holidays and I don’t want to bring her in during the Christmas season and separate our family again during such a special time.
Ceci, our boys and our family need more time to recover from being separated so long and worrying about our girl. Honestly we need a never taken Family Vacation to get away from everything!
Doctor appointments, all her therapies, labs, tests and hospital stays.
This year has been too much and it’s still not over ☹
We have faith that next year will be better. 💜 It has to be 😊
For now we’ve put Ceci’s 63rd surgery on the back burner and will revisit the need again in the springtime. We know she needs it done but I truly believe her body needs more rest.
There was very real concern that Ceci may not make it through the last hospitalization and it broke us down in many ways.
Putting that in words really hits hard. It was a very scary year. We’re just very grateful that she’s doing much better than even a month ago.
Thank you Jesus!!! 🙏🙏🙏
We’re looking forward to next week like so many are.
Me and dad are both off work Thursday and Friday and the boys are out of school Wednesday- Friday. So we’re looking forward to a long relaxing weekend with our family 😊
Thankfully some very kind Thanksgiving angels blessed us so we will have a wonderful Thanksgiving Dinner on Thursday and we have family coming to celebrate with us too.
We continue to live our lives day to day and for now that’s what’s best for our family and our girl.
We’re thankful and grateful for the good days and fight to get through every bad day with the same passion.
Well it’s time for me to sign off for now.
We have medical procedures to get done and I promised the kiddos that we’d watch a movie off of the Disney + app before homework and bedtime 😁
We hope everyone’s doing well.
I’ll be back soon with another update.
Lots of Love and Hugs,
Alexis, Cecilia Marie and Our Special Family 💜
~ Spina Bifida Fighters and Survivor~