Thanks everyone for your text messages, emails and blog comments the past couple of days…we are encouraged by the love that surrounds us! As you anticipated today’s appt with the neurologist along with us, I wanted to share a quick update on the information we gleaned. It’s always a little unnerving to meet a new specialist and summarize, once again, Rudy’s complicated history but we appreciated Dr. Corazza’s direct and thorough approach. Rudy quickly won him over with his sweet smile and, in typical Rudy-fashion, officially welcomed him to his team. Ha Ha
Rolf was in communication with UCLA yesterday (thanks for the follow-up call guys!) and touched base with Dr. Rick briefly. As it turns out, Dr. Rick did a fellowship with Dr. Corazza a while back and offered to send Rudy’s MRI films to him which is super helpful…with that information, we won’t need to schedule another MRI and that will spare Rudy the stress of sedation, etc. I don’t know, this random connection with Dr. Rick from long ago brings a bit of comfort and familiarity to this new branch of “Team Rudy” and we are grateful.
Once again, our iPhone video proved very valuable as we were able to show the doctor exactly what happened instead of needing to rely on our recollections. In a nutshell, Dr. Corazza believes this onset of seizures is a delayed complication to stroke activity that occurred in early infancy–within all the battles in the ICU, there were numerous episodes where Rudy coded or had major drops in blood pressure that could have deprived his brain of oxygen. He doesn’t believe Rudy has had any recent stroke activity or that the seizures he had on Monday caused any more brain damage. This is a relief to us. The challenging reality is that there are no answers as to why the seizures started now or whether or not this will be an ongoing issue. He will conduct an EEG test to check out Rudy’s brain waves on Monday morning and then we’ll add him to the list of doctors we see every 3-4 months. Dr. Corazza agrees with the Keppra treatment prescribed in the ER for now but will adjust if needed. He was helpful in giving us a detailed action plan in the event this happens again…when to call him and give Rudy a Keppra bolus and when to call 911…very practical and reassuring information.
We’re not sure if it’s the medication or if Rudy is taking a while to recover but he hasn’t been himself the past couple of days…he’s still pretty wiped out and droopy. He, however, rallied this morning and Dr. Corazza finished his assessment with this observation…”It’s clear the side of the brain that contains ‘good nature’ and ‘affection’ was not damaged.”…a sweet thing to say and it made us grateful that even when he’s not feeling well, Rudy is fundamentally positive and loving.
We’re planning to go to Children’s Hospital in L.A. on Tuesday night for the overnight sleep study as scheduled. If he passes, I think we’ll still be able to proceed with decannulation so we’d appreciate prayer for continued recovery from this week’s episode and a successful sleep study. Rudy has a big week next week! We have a low-key weekend ahead and will hopefully rest up. Thank you, thank you all! As always, left foot, right foot…one step at a time.