Her sense of organization was clearly handed down to this kid…
This one exhibits hereditary crafting skills…
This one inherited a love for the stage…
This one has her uncanny ability to light up a room with a smile…
I could write a lot about Trish and the mother that she is, but it wouldn’t add much to what’s so evident to anyone who’s seen her in action or has even passively been following Rudy’s Beat. Her devotion and love is shown daily in her concern for all of our kids and especially in the way she assumes the added burden of managing the care of a medically fragile child. We are so blessed through you, Trish, and we honor you today. Happy Mother’s Day!
And probably no better way to show it than a dose of Rudy-love! Roll the video:
Quick Medical Update: Things have calmed down here after the seizure episode, but now Rudy caught himself a cold and some conjunctivitis. He’s not really thrilled about the eyedrops and is a little less perky that usual, but still the pleasant trooper. Expecting all of this to get cleared up before the EEG Monday and then the sleep study on Tuesday.
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.
Thank you all SO MUCH for your prayers…it was a long night and we’ve had a long day of bureaucratic leg work but we’re ending the day with a neurology appointment on the calendar so we’re pleased. Rudy woke up with a smile this morning and is particularly happy now that the big kids are home so he doesn’t seem any worse for the wear. All in all, we’re so thankful for how last night unfolded…many blessings in the midst of the latest twist.
As Rolf mentioned, it was Wilson who brought Rudy’s seizure to our attention (BLESSING #1). Rudy was fast asleep and Wilson went to kiss him goodnight when he noticed the excessive amount of drool and twitching mouth. At first I thought maybe it was just a muscle spasm but then suspected it was a mild seizure when we woke him and he wasn’t responsive…it lasted about a minute. We called (our friend/neighbor/PICU nurse) Tera to come over and help us assess the situation (BLESSING #2) and just before she arrived, he started another seizure. Tera confirmed right away that, indeed, he was seizuring with minimal movement of his left arm & leg and began making some calls to Cottage SB to let them know we were on our way. Rolf got on the phone to UCLA to give them a heads up (protocol for us any time we take Rudy to the ER here in town) and Dr. Marie was the fellow on duty (BLESSING #3). Because of her first-hand knowledge of Rudy’s history, she began making arrangements for Rudy’s transport to UCLA if the situation warranted an admit. I gathered Rudy’s equipment and we were out the door in minutes. Rudy had a total of about 4 seizures during this time and thankfully Rolf had the presence of mind to pull out his video phone and we captured a couple (BLESSING#4) which proved helpful in the ER since he didn’t have any other episodes after that. Rudy was pretty calm but by the time we got him to the ER, he color was concerning and he was quite distressed. The two attempts at an IV made him epic-mad but the tantrum drained what energy he had left and he fell into a deep sleep soon after…so much so that he didn’t need to be sedated for the CAT scan. The ER staff caring forRudy were great (BLESSING #5) and we appreciated the time the ER doc took to explain the situation to us…as far as we understand now, it was confirmed in last night’s scan that Rudy did have a series of small strokes likely caused by severe dips in his oxygen levels early on. This is something Dr. Rick warned us about while we were still at UCLA but, at the time, this was the least of our worries so we shelved this information and there was never really a reason to follow-up on it. Last night’s doc wondered why he hadn’t had seizure activity before this and there isn’t any clear explanation as to what triggered it last night. Rudy was prescribed an anti-seizure drug (Keppra) to be taken twice daily and discharged. We got home at 3am (Thank you Lisa for hanging with the kids! – BLESSING #6) – and managed to sleep a few hours.
We are blessed to have two good pediatric neurologists in town and today was spent taking the steps necessary for insurance to get Rudy in to see one of them. We have an appointment Thursday morning at 9am (BLESSING #7 considering the next available appt isn’t until mid-June!!!). Hopefully we’ll get more helpful information then. In the meantime, I need to make several calls tomorrow to Rudy’s other prescribing specialists to notify them of his new medication. We pray fervently this will turn out to be an isolated incident but, in the event it’s not , we sure want the team at large to be informed and to help us keep an eye on the big picture. One very secondary but potentially significant silver-lining in all this is Rudy’s eligibility for CCS (Califoria Children’s Services). He has been repeatedly denied and the last very firm, door-shut denial was due to the fact that his diagnosis did not fall under any of their neurological labels! This new diagnosis may be the “label” he needs. I know, it all sounds a bit twisted but maybe this will allow him to get the services we (and his therapy team) believe he needs (BLESSING #8?). We’ll see…
In any event, thank you for praying and please continue to do so. Our concern lies with the big kids too…we really didn’t get a chance to check in with them before they headed off to school this morning and Max called mid-morning worried and weepy. I think they are all reassured this evening but we’re all left feeling a little insecure. I can’t believe I’m going to say this but heart issues feel so much more straight forward to me right now compared to brain issues. I hate bobbing in unfamiliar waters…:)
I’m not sure how people will feel about the “seizure video clips” (The vote around here is: Wilson and Max think they are weird but okay to post, Olivia thinks they are disturbing, Rolf’s not home to vote). I’m posting them below for our records…feel free to view them if you’re interested. They are mild, focal (partial) seizures and by no means graphic from a clinical perspective but it is kind of hard for me to see the glazed, confused look in Rudy’s eyes.
It’s 1:30am and the good news is that Rudy doesn’t need to be admitted so we should be on our way in about 30 minutes. The bad news is that the CAT scan showed good evidence for why there would be seizures. The doc took lots of time to explain it to us but, given that our specialty is single-ventricle hearts, being introduced to neurology at 12:50am does not make for good retention. Something’s smaller than it should be…other things are bigger than they should be. Ugh (I’m finding it hard not to type any number of choice expletives right now. I just wish Rudy would get a break on this one.). They have an anti-convulsant drug that will do something that makes everyone comfortable with sending him home.
We do recall the team at UCLA saying that the long battle in the ICU and a lifetime of poor oxygenation can impact neurologic function. The cat scan shows areas of calcification that are consistent with stroke history. The ER doc wondered why something like this hadn’t happened sooner. We’re leaving with a referral that welcomes a new member to the team–a Pediatric Neurologist. They say she’s a good one. The Rudycoaster loops again.
Rudy had a 30 minute episode of focal motor seizures at 9:30pm. Wilson brought it to our attention that he was drooling and twitching on the left side of his mouth. Our nurse-neighbor-friend Tera came over and came with us to Cottage. Rudy was very distressed at first but is tuckered out after getting stuck for labs and Xrays. We’re waiting for a cat scan and communicating with UCLA about transport (less likely now than on our arrival). This is a new occurrence (to our knowledge) so lots of questions right now but glad things aren’t as scary as when we got here. Appreciate your prayers. Updates when we have them.
Although the kids have been swimming the past couple of weekends, this weekend felt more like the official start to the summer season with the family pretty much camped outside on the back patio all day Saturday and Sunday. The kids logged hours in the water, a couple of roof jumps and some “modified” water-fun with Rudy (see pics below). I consider it a huge victory that none of the fair-skinned Geylings got sunburned! Aside from Rolf’s raging allergies and my post-royal wedding blues, it was a perfect weekend. Happy May Day Everybody! And Happy 31 months Rudy!