2 Sweet Girls and Their Parents: August 2014

Update time :)

So I posted a small update on Facebook after the bronc last week, but here's the long version:
Overall, everything went well. Maddie did fabulous during the procedure and came back to the room smiling like she had just gone for a walk down the hall (HUGE change from the last time she was sedated, so this was super pleasant to see). I really liked the doctor who did the bronc and her anesthesiologist, too. The whole thing took maybe 30 minutes and the doctor was back in our room talking to us. They found that Maddie's vocal cords are webbed towards the back of her throat, Glottic Webbing, and also that she has Laryngomalacia where the tissues above her larynx (voice box) are softened and floppy, causing the tissue to fall over the airway and partially block it. Neither one of these are a serious issue for her. It does cause a little irritation while being intubated--which we know from her previous surgery that the doctor had to pull out of for further testing on her hips. But if the anesthesiologists are aware of it, they should treat accordingly. I told her anesthesiologist this time that she had stridor (swelling of the throat, causing issues breathing) post op and asked if they could give her a steroid this time to avoid having that issue again. They gave her Decadron and that made a huge difference, no breathing issues at all. The Laryngomalacia is something she should have outgrown by now--typically it's seen in infants. So our bronc doctor advised us to visit a local pediatric ENT to get their input. We were sent home with lovely pictures of Maddie's throat and abnormalities that he saw, along with his findings typed out so we will be taking her to the ENT on August 11th. We received the referral for a great pediatric ENT through Facebook love, so thanks Megan and Jenn, we got right in!
Just a little side note--the vocal cord abnormality is a congenital defect, which means it's most likely hereditary. This, she got from her momma. When I was around 12-13 years old, I started noticing a catch in my breath that sounded like a small gasp, and from what I understand, I wasn't sleeping all that well. I still have the small gasp to this day if you pay attention. Mom and Dad took me to and ENT and they scoped my throat and found my vocal cords quiver and don't open all the way. I had to do breathing therapy for a few months to "train" my vocal cords to open the right way. No biggie at all and I've not seen the ENT for years.

After the ENT, our next step is the MRI which I am super anxious about, along with all of our family and friends. This is the test that will tell us what that tissue in her joints actually is and if it can be removed. We are working with the hip guru from what I understand and I trust him completely. I'm not sure we will get the results of the MRI that same day or if he will call us to discuss. Heck I'd hang around Indy for the day if he wanted to take some time and consult with the radiologist and bring us in that afternoon or even the next day to discuss the results. I'm going to be a nervous, excited, worried, hopeful walking ball of emotions after the MRI, just waiting to hear from him. I'm already picking my nails while staring at the screen to compose my next sentence.

But here's how I feel about it, and I'm sure Tyler would agree with me:
Maddie is Maddie....I just love her the way she is, dislocated hips and all. I mean of course, that goes without saying. Selfishly, I'm OK if they find they cannot remove that tissue and put her hips back into place. It means less surgery which is nerve wracking to begin with. She could walk with a limp, she would likely need a hip replacement early in life, I'm not sure she would be up to par with her classmates on the physical activity side of things....but honestly, it could be so much worse. I have no doubt that Maddie is a tough little thing and can handle the challenges it would bring. If they can fix her hips, GREAT!!!! She can handle that, too! She's young and probably wouldn't remember any of it. I'm super ready for her to be in a cast and it brings a sense of excitement for me to think about it. I mean, I was ready for the cast a month ago this past weekend, she's supposed to be 4 weeks into it by now. I'm so grateful her surgeon is surgically conservative and didn't want to open her hips up without knowing what he was looking at. He could have opened to look but she would have a nice scar for nothing if they can't remove that tissue. Although it's prolonging treatment, she's not having anything done unnecessarily and I'm thankful for the great team of doctors at Riley that we have dealt with so far--we are impressed.

We went to the Owensboro Riverside playground and splash park this past weekend and oh my gosh, the girls had a BLAST. I highly recommend going for the day. Maddie got a kick out of stepping on the geysers and then waiting for them to shoot back up again. The first time, I was ready for it and got it on camera. Picture of the year. If the girl could cuss, she would have. But she went right back for more!