12/20/13

Caity Surgery Updates

So my sweetheart Caity had ear surgery in September and had her spinal surgery done in October.  This now makes 13 surgeries to date!! The ear surgery cannot technically be considered a surgery, but it was a surgical procedure in which they put tubes in both of her ears.  Caity is completely deaf in her left ear. Has less than 5% hearing in her right ear and eventually will be a candidate for cochlear implants should we choose that route for her. But that's another story.

What I wanted to update everybody on is her spinal surgery. Getting to the point of her surgery was a headache.  Therapies, endless referrals, referral denials, calls from the Ellen Show and newstations, fundraising, dr visits, trips to St. Louis, waiting, waiting, waiting.. for 13 months! Finally, in October, Caity had surgery on her back to correct her severe scoliosis. Her spine was curved 89 degrees!  We opted for growth rod implants instead of spinal fusion.   Every 6 months, Caity will have to have growth rod modification surgeries to adjust her rods. We will do this for the next 4 years approximately.  The first surgery was supposedly the worst, so thank GOD we managed to get through it.

So let me just share some photos and tell you about the experience.


The day prior to surgery, we had to take Caity in for a surgical procedure to put in her central (PICC) line in her chest. We stayed at a nearby hotel and had to be up at 5am to get Caity to the hospital.



Anyways, welcome to the 7th Floor at SLCH. The Parent Lounge was my home away from home for a few days while Caity was in the PICU. 



This is the first look I got right after Caity went to recovery. Her surgery took almost 5 hours, but her orthopedic surgeon called me in my private waiting room to let me know Caity's rod implants were successful. 



This is Caity 1 hour post-op, in the PICU, resting. 


Caity had a nasal trumpet in her nose and down her throat. This thing actually was the cause of Caity coughing up blood and developing pneumonia during our stay. 


Caity couldn't breathe on her own, so she was on oxygen during her whole stay. Her dr said before surgery, her left lung was collapsed (pneumothorax) from her scoliosis and when after surgery, being able to breathe through her lung again like normal caused her to cough up lots of blood and the pneumonia didn't help.


Because of Caity getting pneumonia, and having a history of epilepsy, we had to be placed on the 12th floor, in isolation. (Yay for private rooms!) I was grateful to be able to room with her, even though I had to sleep in a chair for 10 days!

 I stood by her side every single day and held her hand, prayed for her, talked to her, watched tv with her and did all of her therapies with her therapists and met with all of her amazing team of specialists. Hospital stays are our specialty. Over the years, we have had to get used to them. The hard part was being 3 hours away from home, and away from my other girls for over a week for the first time ever!!  It was just as hard on them as it was me. They didn't understand what was happening to their sister. I got to hear my daughter's telephone voices and it made me cry a lot.  They're such sweethearts.  Evangeline thought we were "on vacation" without her. The sweetest thing. If only hospital stays were luxurious, comfortable, had terrific food, weren't freezing all the time.. and monitors were all silent.. then, sure!   Hahahah.. NOT! 


Fact: I have never missed a single hospital stay. I am always by her side. I have only missed 1 dr visit (hubby took her to her neurologist once) and I have only been away from her for 1 week max of her life. (Hubby and I went on a trip to TX in 2007 to find a place to live while she stayed with her Grandma & Grandpa, and then when I had Caity's little sister Jocee, her Aunt Destinee babysat her for 2 days for me while I was in the hospital myself!)








Caity's hospital therapy included sitting in the upright position in her wheelchair. We did this from 30 minutes to 5 hours a day, every day. It helped her breathing.



Caity had to do breathing treatments during respiratory therapy and have cpaps done everyday when she had pneumonia. 


Caity's nurse Muffie was so sweet. 


Because Caity has Epilepsy, she was placed on the Neurology Floor at SLCH, which is the 12th floor. Most surgery recovery is done on the 10th floor, but Caity was due for seizures and wasn't having them, so her neurologist here in Springfield requested that we meet with one of SLCH's epileptologist, Dr. Zempel and he wanted a video E.E.G. done.   So we had one, and the results were that even though Caity didn't appear to be having a normal seizure, he could see seizure activity firing all over her brain every second.  We had a longer hospital stay to see if she would have one of her grand-mal seizures during our visit, but it didn't happen until she was 16 days post-op, and they have since her surgery been very irregular and changing. We follow-up in January with neurology at SLCH and with Dr. Bakdash here at home.




These are Caity's medications right now. Every single day up to 3x a day for some. Kind of ridiculous, and tedious to mess with sometimes, but anything for my girl. 


First Day Home! Post-Op face masks are a must have when coming in close contact with Caity after any procedure. This one was no different. Esp. since she had pneumonia. Caity is lucky to have two little sisters who love her and worry about her! 


Caity's Before and After Growth Rod Modifcation X Rays








6 weeks post-op, Caity was able to sit up, without any pain and I was able to brush her hair while she sat up. She cannot sit unassisted yet.  Her glue has since this photo also all came off of her incisions as well. It has healed nicely. The scars are forever, but my baby girl being able to breathe better on her own is more important. 


Took Caity and her sisters and the 4 of us all got out of the house. We went to the park, and I put Caity in her stroller, and her sisters got on their bikes and we rode around the neighborhood. It was our first day out of the house since she had come home from her surgery.  This was about 1 month post-op. She was all smiles. The fresh air was appreciated by all of us. 


As of now, 8 weeks post-op, Caity is doing pretty good. Her smile has returned. She doesn't move unless I move her, so I think the rods do bother her still. She doesn't cry in pain as much and I can definitely see a straighter back. She still has a hump near her right shoulder blade and the top of her spine is still curved, but over time it will be adjusted out.  She still sleeps for about 17 hours out of a day, but with all of the meds she is on, I am sure that is the reason. 
I am so glad we made this decision for her. 


Thanks for reading & following her updates. 
Thanks to the people who sponsor her also!