Neurology Update

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.

Here’s What We Know So Far….

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…:)

therapy1 — Earlier in the day on Monday, Therapist Jodi successfully distracted Rudy with toys until...

therapy2 — ...he realized OT Kris was getting him to stand! Ha Ha

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.

Headed home shortly

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.

Thanks for praying.

At Cottage ER

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.

Official Pool Opening

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!

royal wedding — Rudy wasn't up for the live wedding broadcast but he watched the recap with me Friday morning!

Baby pool2 (2) — The new kiddie pool Rolfi brought home for Rudy didn't go over too well on Saturday with gal pal Stella...

baby pool5 — ...but by Sunday, Rudy was getting the hang of it and lovin' his new-found life of leisure...

baby pool4 — The big boys couldn't resist the lure of the kiddie pool either!

baby pool6 — May 1, 2011 Happy 31 Months Rudy!!!

Royal Wedding Fever

I’m a freak! I have an absolute mountain of chores and paperwork that I simply MUST get to today (my first full day at home in over a week) and I’m glued to GMA’s coverage of the royal wedding and spending WAY too much time trying to figure out how to print the Official Royal Wedding Programme that was just released to the public! Yep, I’m a freak…

Longtime friends know this about me…my parents and I were on a vacation when Prince Charles and Diana wed in 1981 and I have a very vivid memory of sitting in our hotel room watching the wedding live in the middle of the night. I soaked up everything Diana and when she died, again, I stayed up to watch around-the-clock coverage (remember Grace?). The hoopla over Prince William and Catherine’s wedding has been a fun distraction and, shamelessly, I will be up watching all the pomp and circumstance live like I did 30 years ago! Ha Ha

Rudy is pretty uninterested in all that but he is keeping himself very busy these days as his world here at home becomes gradually bigger…

Not only is he getting around more and more at home, but he is also getting around on the town too…he had another celebrity meet and greet at a breakfast Rolf MC’d last week…can you guess who it is?

kathy ireland4 — Can you figure it out? Think...80's icon...

kathy ireland1 — ...Think "Sports Illustrated" or interior lighting...

kathy ireland2 — Tah-Dah! Supermodel Kathy Ireland!

kathy ireland5 — Rudy is living the high school fantasy of many men in my generation!! ...a little snuggle with Kathy Ireland 🙂

After the thrill of meeting Kathy Ireland, Rudy had a blast watching a flurry of children hunting for easter eggs at church on Sunday. A fun Rudy-memory-maker for the big sibs especially…

easter3 — Wilson and Rudy staged and ready to watch the hunt!

Happy Day Indeed!

Cheer-i-o all you royal watchers!

The Hope of Heaven

: Greg’s latest…Thank you Greg!

A neat thing happened to me this week…I heard a song that really touched my heart (brought me to tears while I was driving) and I was disappointed I didn’t catch the song’s name or the artist who recorded it because I wanted to find it online and then yesterday I got an email from my good friend Grace that simply said “I can hear you singing this song” with the link to “Blessings” by Laura Story…THE song…the one I heard and couldn’t find! How fun…I love it when things like that happen and the timing of Grace’s email couldn’t have been more perfect as the song expresses so beautifully things that have been on my heart this Holy Week…a deeper, more experiential understanding of the beauty of Christ, hope in heaven and how it all intertwines with human suffering, heartbreak, struggle.

With each passing day, I’m amazed at how much energy Rolf and I spend thinking…it feels, sometimes, like our minds never stop spinning as we think through all of the practical, emotional and, yes, even the hypothetical details in caring for Rudy’s special needs, in caring for our family as a whole and in caring for the needs of Rolf’s work at the Rescue Mission. Rolf seemed deeply pensive recently and when I asked him what he was preoccupied with, his response was “I’m trying not to think”. Indeed!!!! If only we could shut down like we do our computers…just for a bit. We started seeing a pastor in town about a year ago to help us process all these things we spend our time thinking about and feeling whose wise and thoughtful counsel has been a true blessing. I was sharing with him one day about the potential of losing Rudy and how I had come to terms with that reality for Rudy’s sake but was struggling with my role in the equation…how I could see (and believe with all my heart) the wins for Rudy but, okay I’m going to be brutally honest here, couldn’t see the wins in it for me. I went on to explain how, to me, life for Rudy this side of death means a life with a family that absolutely adores him and has the capability and resources to care for him and life after death means eternity in heaven…whole, face-to-face with God, free of the things that restrict him now…win/win. But in my darkest moments, I confessed, I struggle with the knowledge that my role puts me front and center in watching his decline (should that be the pathway we walk) and then tremendous, unimaginable, life-sucking loss…no wins. After my drawn-out, twisted ramblings, he said “there are wins, you know, what are they?”. I shrugged my shoulders and out of a sense of obligation I listed things like “the joy of having him in my life – even for a short time”, “the many amazing lessons I’m learning in the process”, “greater dependence on God which is drawing me into deeper faith”, “the compassion and sensitivity toward people in need being cultivated in the big kids”, etc…all of which are true but hold little consolation, really, when life feels its darkest. But Denny wasn’t satisfied, I hadn’t hit it yet and he encouraged me to go deeper. Confused, I said “Denny, I don’t understand. What do you mean?” and very simply he said “Your wins are the same as Rudy’s!”. And in an instant the tears of pain and heartache that were streaming down my face led to tears of reassurance of and longing for…heaven! I had an eternal perspective on Rudy’s life and a very temporal perspective on my own!!! Because of Christ’s amazing sacrifice on the cross and triumph in His resurrection, heaven is MY win too. It’s a truth I’ve known for a very long time and it sounds so simple but there’s no way I can describe in words the profound depth this simple truth rooted in my heart that day – it was transforming. Sure, I still struggle with fear and how we’re going to get from point A to point Z but when I find myself slipping into mind-spinning thoughts, the thought of heaven and all that awaits me there pulls me up and onward…one step at a time.

Which brings me back to the song “Blessings”…here’s a link: Click here! Take a minute to listen and pay particular attention to these lyrics tucked in the bridge and final chorus…”When darkness seems to win,we know the pain reminds this heart that this is not our home…What if my greatest disappointments or the aching of this life is the revealing of a greater thirst this world can’t satisfy.” Yes, YES, this is it…this is at the heart of all the challenges we face, isn’t it? I pray a special blessing on you this Good Friday…may you know this hope we have in Christ and may you be reassured that your deepest thirsts will one day be satisfied. A blessed and happy Easter from our family to you!

A Few New Firsts

With just 6 weeks left until summer vacation, we are finding ourselves thrust into the end-of-the-year tidal wave of activity…special school performances and trips, preparing for state testing and two very special graduations from elementary school and middle school for the boys, doctor appts, immunizations and keeping everyone motivated in general as the final countdown approaches. The challenge, actually, will be to keep myself motivated…with all the heightened activity this spring and preparations for the big boys’ enrollment to their new schools NEXT year and our efforts in getting some of Rudy’s future therapy needs figured out, etc, etc, etc, I’m pretty much ready for the lazier days of summer!!!!

Rudy had his routine appt with pulmonology at UCLA on Tuesday. It’s always good to check in with the folks at UCLA but the exam didn’t generate any new news or plans. We can’t move forward with decannulaton of Rudy’s trach until he has his sleep study…I’ve been working to get the study scheduled at Children’s LA for the past 2 months and it still isn’t on the calendar…we’re waiting for their pulmonologist to review the order. Once we have the doc’s confirmation, the earliest available slot isn’t until June so we could be waiting a few months. (patience…patience…patience)

We sure had fun celebrating Wilson last week on his 14th birthday which offered a few new firsts for Rudy including….

…his first “Looking Good Santa Barbara” clean-up day!

This annual, city-wide clean up day fell on Wilson’s bday this year and he initiated our family’s participation as part of his day ‘o celebration! We enjoyed working alongside some friends from church on a gorgeous Santa Barbara day and got some great exercise weeding and cleaning up a local park…

…and his first “Teenage, Boy/Girl Party”…

Gone are the days of themed bday parties with silly games and novelty cakes for Wil…this year he asked for a gathering of friends to “hang-out” and eat pizza & smores! It was such a blast to watch Wilson host his friends…making sure everyone got drinks and food, setting up the music system and keeping the tunes rolling all night, paying attention to little details and having a great time. Although we were prepared to set Max, Livy and Rudy up in another room with a good movie to give Wilson and his friends some space, they actually fit into the mix sweetly and Wilson was gracious to let them stay and “hang out” with the cool teenagers the whole evening! Rudy, of course, LOVED the throng of pretty girls that surrounded him a good bit! Ha Ha Rolf and I spent most of the evening sitting on the couch twiddling our thumbs as there were no games to facilitate or elaborate scavenger hunts to produce, but instead we got to sit back and watch the dawning of a new era in the Geyling household…

I tried to sneak in a little festive ambience but the hobo-clown got vetoed and promptly taken down!!!

The sun has set at the end of a long day and so has Rudy...

We had a bit of a breakthrough with Rudy’s interest in eating this week. Rudy has transitioned over the past several months from full-on food aversion…to a passive resistance to us putting anything in his mouth…to accepting small bites of baby food!!! He still gags if we put the spoon in his mouth or if he gets too big of a bite BUT if HE initiates contact with the spoon like he started doing with Rolf this week, he’ll come back for more as you can see in this video…

Could this be the dawning of yet another new era in the Geyling household? I know, baby steps but “yeah!”.

Two Years…

It’s hard to figure out what the most memorable day of Rudy’s journey has been for us. We’ll never forget the adrenaline of his birthday (10/1) or the anxiety of his Norwood Day (10/6), but there’s nothing like the elation we felt on April 7, 2009 when we finally made it out of the hospital on a rainy un-spring-like day like today. It’s hard to imagine that was two years ago, and sometimes it even gets difficult to recall the seven months he battled to get out of that hospital–but not enough that we start to take life with Rudy at home for granted.

We’ve already read through the posts from that week and watched the slideshow of that incredible day a few times and probably will a few more. When we left the hospital, the team hoped that we would be able stay away for six weeks before needing to come back for the Glenn procedure. Rudy showed his trademark disregard for anyone else’s timeline–we were back in two weeks (but not for the Glenn–we still haven’t had that).

2years home video — Rudy reliving the big day

Not much has turned out like we thought it would, which carries its share of heartbreak. But there’s also much cause for rejoicing. The delicate little kid with the stringy curls and battle scars who fought his way home is a far cry from the happy, robust and squirmy boy we have today. His bewildered stare has turned into a smile for everyone he meets–there are times where he just seems to exude love and joy from every pore. It’s been a journey of concern and anguish, but also richness and beauty like we never imagined; and we’ve drank deeply from that these last two years.

2years home — I much prefer life at home!

Max The Diplomat

Max impressed us this past week with a couple of bold moves on Rudy’s behalf that left us wondering if he’ll run for office one day. 🙂

The first occured the last day of school before spring break. It was the last Friday of the month and, therefore, award assembly day at the elementary school. I was notified earlier in the week that Olivia was going to win the character award for her class (Yea Livy!) and so I made sure I was there to cheer her on. I was also pleased to go to watch Max perform one of his acts as Student Council President – passing out the awards along with the school Principal and SC Vice President. The monthly award assembly is not something I generally attend as there is ALOT of applause as well as celebratory cheers and Rudy is not only hyper-sensitive to the sound of applause but he can get himself so worked up that he goes into respiratory distress. Sure enough…as the first awards were handed out and the applause began, Rudy’s face turned red, the tears started to flow and his deep, panicked cries rang out loud and clear. I immediately stood up and began to gather our things preparing to make our escape out the back door when Max approached Mrs. Santiago on stage and asked if he could address the school. She quickly stood to the side and gave Max access to the mic. He then told the room full of students and faculty that his baby brother was in the audience, he pointed Rudy out, proceeded to explain that Rudy doesn’t tolerate applause and asked if everyone would sign the ASL sign for “deaf applause” instead which consists of holding your hands in the air and twisting them back and forth a couple of times. I was blown away by Max’s quick thinking and confidence to follow through with his instinct!!! I was also touched that Mrs. Santiago trusted Max enough to give him the mic without asking him first what he wanted to say!!! And how sweet of the school community to comply and wave their “flying fingers” for Rudy’s comfort!!! Rudy’s response was swift…he calmed down and although he was still physically shaken, we were able to stay seated for the entire assembly and all the vigorous (but thankfully not thunderous) applause!!!-Thanks Max

The second occured today when we had a Santa Barbara moment and just happened to run into Rob Lowe at one of our favorite local taquerias. Although a ton of celebrities live in our community, we don’t generally frequent the same establishments so this sighting was a big deal. Being a “brat pack” fan in my youth, I was pretty giddy and wanted to get a picture of Rob with Rudy but was too shy to ask. Before I knew it, Max walked right up to him as he and his party left the restaurant, said “hi”, shook his hand and asked if he would come take a picture with his baby brother. No inhibitions…so confident! Rob Lowe couldn’t have been sweeter…he came right over, got down on Rudy’s level, gave us time for just the right shot and took interest in the big sibs too. Rob, if you google yourself and happen upon this post, THANK YOU for being so kind to our little superstar!! And thank you Max for going for it and making things happen!