We’ve had a busy few weeks and I’ve got lots to say…..
The trip to Detroit went well. We didn’t get the answer we wanted: Maddie is still not a candidate for any type of resection of the brain. This means we still don’t see any single focus (an area where the seizures start) that we could easily remove. In Maddie, seizures seems to start from multiple places on both sides of the brain at the same time. So the more successful surgeries are still not an option for her.
But the news wasn’t all bad. The main test we traveled there for, a PET scan, showed that the metabolic activity in Maddie’s brain looks pretty good. The doctor was pleasantly surprised at how good it looked. It means at least that her brain doesn’t seem to be deteriorating, which is something we all worry about in a child having this many seizures.
Also, Dr Chugani agreed 100% with the course of action being proposed by Maddie’s neurologist at Duke. They know each other and Dr Chugani again reassured me that both the Neuros we see are top notch and he respects their opinions heavily. So that is always nice to hear.
I want to go chronologically since we’ve done so much and I don’t want to leave anything out. You can skip to the bottom if you just want to know what’s next for Maddie.
The trip to Detroit was super easy and I have my dad to thank for that. Commercial air travel with Maddie really freaks us out for a whole host of reasons. So my dad really spoiled us and we traveled the easy way. We feel really blessed to have that option as it removed the stress of travel from the equation and made what would have been an otherwise crazy 3 days into a super easy 24 hour hospitalization, if you can ever say hospital time with a child is easy.
Brandon and my mom were both with us on the trip and it really went smoothly because there were enough adults to keep Maddie entertained when she was confined to a bed during the EEG and while she had to be NPO pre-sedation for the PET, as well as thru all the admin crap that comes along with a hospital admission.
Not everything went smoothly at the hospital but it all got straightened out in time not to affect our travel plans or make Maddie have to wait around too long. Once the scheduling nurse realized her mistake, they really went above and beyond to meet our needs. In fact, Dr Chugani came down and saw us in the PET department just as Maddie was waking from the sedation. He read her PET right there and we never had to deal with a long clinic wait with a crazy kiddo who was ready to escape the hospital. It’s amazing how some of the little details make all the difference when you’re inpatient. The admitting doctor and pharmacy agreed to let me give our home medications while we were there. At Duke and UNC we often argue for days about it and they try to force us to give different versions of one of her seizure meds because it is all that they have available through their pharmacy. It’s nice when a hospital treats you like a competent parent who can manage to give their child their medications appropriately just like you do at home everyday in real life!
So aside from getting a “no” to a new surgical option, the trip went as well as we could have hoped. And now that door is closed and we won’t be headed to Detroit again anytime soon.
So we returned home and had a couple of days of Maddie’s ABA therapy and a meeting with the new home-bound teacher who was to start the following week. Then we took a much needed escape to the beach for Memorial Day weekend. We got some great family pics taken. Which was good planning since by this time next month, our princess will have a crazy hairdo and a big scar.
Yes, you read that right. Maddie is scheduled to have brain surgery July 8th at Duke.
When we got back from the beach, we had appointments at Duke with her neurologist and their neurosurgeon. It took us awhile to process all the info. Plus, Maddie had to be presented at a conference of the Duke Neurology staff for them to decide if she was indeed a good candidate for the surgery. I got that answer (a yes!) on Monday while on the way home from a one-night trip to Charlotte for her oncology check-up (she is thankfully still in remission!). We then got confirmation from the neurosurgeon Wednesday that he would try hard to get her in for surgery before he relocates to CA to take a position at Stanford. And today we got confirmation that it is actually happening and a date.
So on Monday, July 8, Maddie will have a corpus callosotomy at Duke. We hope and pray that this will improve Maddie’s quality of life by reducing the frequency and intensity of her seizures. Especially the drop seizures which keep her from being able to walk independently and make her such a safety risk in everything that she does.
I will update again soon with more info about the surgery and how we came to this very difficult decision. I’d typed pieces of this update over the last weeks and wasn’t sure how to explain it all until we really knew how we were proceeding. So now that its official, I thought I’d share.
Brandon also competed in the Raleigh Ironman 70.3 two weeks ago. It was inspiring and really fun to watch. Big thanks to my mom and Lance who came up to watch Maddie so that I could go out and be a spectator and cheer him on. I think there will be more triathlons in both our futures. It just looked fun.
Much love to everyone,
Liz, Brandon and the always amazing Maddie