I know I usually say we try and take things one day at a time but, right now it seems like we need to take them one hour at a time! I have to apologize in advance as I don't have any pictures to add this evening. We just got home from a city planning commission hearing (yes, our neighbors are still opposed to having a rehab facility for TBI patients in their backyard). We did learn tonight that the facility will also have an outpatient rehab for PT, OT and ST. This development may or may not have made me want to jump with joy. But, I'll save that for the actual City Council meeting next month :)
Sunday I received an email from Dr. Niparko. A doctor I’d heard of but we'd never met with him. He happens to be Professor and Chair of the Otolaryngology department at USC and just recently came to USC from Johns Hopkins. He needed to talk to us and the fact that it was a Sunday sent a zillion red flags up that something was up.
Dr. Niparko has been part of the team trying to get Pediatric Cochlear Implants approved at USC. We knew all along that the last hurdle before surgery proceeded at Keck would be to have the Board of Directors approve Riley’s case. After a meeting sometime last week they decided that for now pediatric implants need to be done at CHLA. And this is where we held our breathe waiting for what he’d say next.
Thankfully, Dr. Niparko has privileges at CHLA and works there in the ENT clinic a couple days a week. So he will be taking Riley’s case on. He also knew how important it was for us to have this surgery done so they made room at CHLA for Riley to still have her surgery done tomorrow. Since things changed so unexpectedly we had to roll with whatever they had planned for us this week. Which meant… instead of our Pre Op appointment at Keck today, we headed to CHLA for our pre op appointment and to meet Dr. Niparko yesterday.
We’ve never been to CHLA so this is a whole new facility for us and it’s going to take some getting used to! And in LA traffic getting to CHLA is sort of a nightmare. I’ve never been so thankful that the majority of our doctors are at CHOC then after yesterdays fiasco of a morning!
We pre registered, met with the nurse practitioner to go over Riley’s history (you know our most favorite thing to do ever). The NP was quick and super understanding. She didn’t dwell on how Riley got sick nor did she ask if Riley’s twin was “normal” (yes, we had a nurse do this last week).
After that we headed over to the clinic to meet Dr. Niparko. Both Dave and I have spoken with him several times this week and emailed with him so I knew he’d be a decent doctor. He's really gone out of his way to make sure we know Riley is being taken care of and is in good hands.
We’re set to go for surgery tomorrow at 730 am. However, some more last minute changes were made during our meeting. I’m still not sure how I feel about them. It’s possible that I need to relax and realize that he’s the professional and he knows what he’s doing but, a part of me is scared that there is more behind his decisions.
Dr. Niparko only wants to do one of Riley’s ears right now. After she heals from this surgery we’ll be looking at doing this again in the other ear in 3 months. His reasoning is that due to Riley’s trach, g tube, seizures etc. he doesn’t want to keep Riley under for longer then necessary. While I guess I agree I am frustrated because I think doctors that first meet Riley have a hard time looking past the trach and g tube and seeing that other that those extra accessories and a seizure disorder her other organs are fine. So we’ll go with the flow and trust his decision. I’m just taken aback that he walked in talking about a bilateral implant and left deciding to do one. I also worry that they won’t see the type of response they want from this implant and they’ll decide to not do the other. Irrational? Perhaps? But, when you are fighting day in and day out for your child every and I mean every thought crosses your mind.
They’ll start with the left ear. We know Riley could respond to us from this ear all along so I guess this is positive. Most of your speech comes from the right side of your brain which is why they start with the left ear. My fear with this though is that the majority of Riley’s brain damage is on the right side of her brain….
But, only with time will we know what the implants will do for Riley. And for now we are doing our best to get Riley what she needs.
After months of trying to get this surgery scheduled. After switching doctors, hospitals and calling more people then I can count I sit on the eve of this surgery still in shock that tomorrow is THE day.
Please keep Riley in your prayers and thoughts. Her surgery is the first one of the day and we’ll be up bright and early to get her to CHLA at 5:30am. Surgery should only last a total of 90 or so minutes. The actual procedure will be more like 30-45 minutes.
If all goes well and Riley comes out of the anesthesia okay we hope to be home by the early afternoon.
Now to try and sleep…
Love you all and thank you for continuing to support us as we take another huge step for Riley.
Dave, Megan, Logan, Mason & Courageous Riley!