There wasn’t any word this week on Rudy’s sleep study results but we did finally receive the 3.0 Ped Shiley trach (1 of 4 ordered) from crApria that was originally ordered on February 22 when Rudy’s trach was downsized. It only took 3 months, 6 phone calls and about 5+ hours of my time this time – well done crApria!! Oh man, don’t get me started, but I am so grateful for Rolf’s ability to procure enough trachs during the last hospital stay scavenger hunt to get us by. We really are blessed to have so little to rant about but dealing with Apria makes up for any headache-deficit we may have!!
On a much sweeter note…Rudy is perking up and acting like his bright self again. He’s still congested but it’s definitely better and he is sleeping better at night. After another full week this past week, the house is quiet this weekend with both big boys gone on a teen retreat at Point Loma in San Diego. We are missing them but we’re having some fun of our own with bbqs and, of course, watching the Indy 500 on Sunday!!!!
Okay, so this video really doesn’t have anything to do with “Rudys Beat” but I had to post it. Wilson enlisted the help of his brothers for an English assignment…he produced an anti-smoking public service announcement and the look on Rudy’s face when the boys walk up to him in the video is priceless. It’s another 4 minute video so it’ll take a bit to buffer…
Happy Memorial Day Everyone…I hope your weekend is filled with bbqs, gorgeous weather and a peaceful heart (don’ t think about Apria, don’t think about Apria, don’t think about Apria) too. 🙂
The big challenge for us this past week has been to balance keeping Rudy at home where he is most comfortable as he continues to battle a cold and junky lungs while keeping up with the flurry of activity in the lives of the rest of the family. We’ve had to “divide and conquer” at times, rely on the big kids to get themselves to and fro on their bikes and white-knuckle our way through a couple of events with Rudy in tow…very creative, sometimes stressful, maneuvering but there have been too many special things going on to hibernate completely!!
The string of monthly birthdays in our family until the next round in the fall culminated on Wednesday with Rolf celebrating #44!!! He was treated to a wonderful bbq chicken school lunch at La Patera’s “Bring your parent to lunch” day and serenaded with “Happy Birthday” by Max, Olivia and friends. Two days later, Rolf and I got to steal away for the day (first time in ? years!) and enjoy a leisurely wine-tasting tour in the Santa Ynez Valley not far from Santa Barbara. It was a gorgeous day that included stops at 4 wineries and a lovely picnic lunch…a perfect backdrop for celebrating the man for whom I’m deeply grateful. My perfect partner in life and family and my dearest friend. Happy Birthday Rolfi!
Wilson received an invitation to the 8th grade awards ceremony which is an indication he won an award but it didn’t specify which one so we were a little in the dark when we showed up to the school auditorium Thursday evening. There were a number of school/department awards and 4 achievement awards sponsored by organizations in the community. Wilson was the proud recipient of the “United Way of Santa Barbara County Outstanding Character Award” – a very special honor…Wilson was so surprised and pleased. In addition, Wilson’s band teacher awarded him with a band trophy commenting that he believes Wilson is the best jr. high drummer in the SB School District to which the crowd of his peers responded with a thunder of applause. It was fun to watch Wilson being affirmed for his hard work and for the work God is nurturing in his heart and life. Well done Wilson!
The final rush of school activities, award assemblies and end of the year band concerts continues this next week so I’m praying Rudy’s bug clears up completely for his comfort and our sanity. 🙂
Medical Update: We saw Rudy’s SB Endocrinologist this past week for Rudy’s routine appointment. Dr. Lifshitz has been monitoring Rudy’s thyroid (dys)function and medication since we brought Rudy home from UCLA two years ago. As Rudy nears 3 years old, it’s time to shake things up a bit and see how he does. The thyroid hormone therapy he has been taking will do it’s job, if successful, within the first few years of life. To test where he’s at, Dr. Lifshitz has dc’d Rudy’s daily dose of Levothyroxine with strict instructions for specifically-timed blood draws for the next two months. If Rudy’s numbers remain normal, we’ll say “goodbye” to the Levo and, possibly, Dr. Lifshitz indefinitely. If he doesn’t tolerate being off the med, then we’ll need to investigate the cause of his thyroid issues more specifically, I believe, with further testing. Bottom line, we’re zeroing in on an isolated system that is intricately connected to the bigger picture and, as always, a little victory (and one less med on the daily list) would be greatly welcomed at this point. Thank you for praying…we’ll keep you posted on this and the sleep study results. Blessings to you….
So much livin’ going on here we haven’t had time to sit down and post. We’ll update you soon on all that’s been going on with the countdown to the end of school, birthday celebrations and a boy with junky lungs. But even in the midst of this, the impulse to dance is hard to suppress (especially when Miley beckons…).
As Rolf and the boys headed out of the cul-de-sac Wednesday afternoon, they spotted a mama duck and her ducklings making their way toward Lake Los Carneros across our neighbors lawn. The boys brought the family of ducks to Olivia’s attention who was playing nearby and Livy was so taken by the sight that she left her electric scooter behind on the corner to help escort those adorable ducklings safely to the lake! Neighbor Jannele joined the escort detail and she & Olivia even stopped traffic on La Patera Lane to insure they’d reach their destination safely. So fun!!! Livy was over the moon as she relayed the whole experience to me and eager to print the pictures Jannele took with her camera phone…(oh, and she did get her scooter back…Jannele found it sitting on the corner where Livy left it and kindly brought it back for her.)
Stickin' together across the street...
Rudy didn’t get to experience the duck parade in person as he fell asleep within minutes of getting home from L.A. but word on the street is this family of ducks gets around quite a bit so maybe he’ll see them on another one of their excursions. 🙂
Ironically, we saw another family of “Ducklings” at church on Sunday. Pastor Jake and his wife Laura asked Max and Livy to do a skit with them to illustrate the sermon lesson…a look at the “perfect family” and a “real family”. So, the Duckworths and the Geylings joined forces to create the Duckling Family…it was cute. ‘Thought you might enjoy it too. The video is 4 minutes long so it will take a while to buffer…be patient. Ha Ha
Rudy continues to struggle with a junky trach due to a bad cold and he has slept long stretches each day since returning home from L.A. So, as he continues to recuperate, Rolf and I continue to follow up with Dr. Corazza and docs at UCLA by phone. I spent some time on Friday researching the neurology terminology in Rudy’s latest diagnosis which helps us in compiling a list of follow-up questions. Dr. Corazza wants to see Rudy again in 6 weeks and in the meantime, Iwould like to pay another visit to the opthalmologist Rudy saw last year. Damage to the occipital lobe of the brain can cause loss of peripheral vision or depth perception which could explain some of the ways Rudy compensates in his therapy. I’d like to follow up with him with this new information and dig a little deeper to determine whether or not there is any vision impairment. There is certainly a list of things we want to follow-up on but thankfully none of it is critical at this point. We can take our time and continue to work through the details thoughtfully. Although Rudy is more tired than usual and obviously uncomfortable due to his cold, he is smiling and happy at home. Thank you for your continued prayers…you are a blessing to our family!
It’s Nurse Appreciation Week and if there’s one thing we’ve become very grateful for it’s good nurses. Of course, we’re still moved at the incredible team at UCLA that fought alongside Rudy during those first seven months (and we never get tired of going here and watching the second slideshow to be reminded of so many of them).
With the amount of coordination we need to do between about a dozen doctors, insurance, medical suppliers, labs and the like, it’s amazing how much things can be furthered by a good nurse. The kind that love Rudy, know the complexity of his condition, are able to stay organized and doggedly persistent when the necessary approvals don’t seem to be forthcoming in the time we need them. We’re so grateful for Elaine at Dr. Pornchai’s office (who remains friendly and upbeat despite the number of times she has had to communicate with crApria to track down various shipments of medical equipment) and Melody at Dr. Abbott’s (who, as our primary care provider, manages an incredible amount of documentation and is always quick to return our calls for all kinds of inquiries).
But we especially appreciate the home health nurses who come take care of Rudy in our home.
There’s Dodi, who brings her bubbly cheer two afternoons a week so Trish can have some “free” time.
Then there are the amazing angels who come two or three nights a week to keep an eye on Rudy all night while we sleep. It still amazes me that there are people who come to our house at 11pm and tell us to go get some rest, but especially in the wake of all the upheaval these last two weeks, we’re extremely grateful that they do.
This group of ladies is a godsend to our family not just because of the practical care they give Rudy, but for the way they’ve become a part of our family. So, in the spirit of Nurse Appreciation Week, we certainly do!
Thanks to these and so many more dedicated nurses who have given Rudy the life he has!
Thanks so much for the many prayers for Rudy the past couple of days. Rudy and I made it down to LA in record time yesterday and got settled in the sleep lab at Children’s Hospital with time to spare. Although I tried to keep him up as long as possible, he conked out while I signed all the admitting paperwork and stayed fast asleep until they started to prep him for the study!!! He fought the sleep lab techs and acted like a normal two year old!!! Poor guy…there wasn’t a whole lot of sleeping going on in this sleep study. The study ended around 6:30am and we were on the road by 7:30am. I made one stop for breakfast and then hit quite a bit of traffic but we made it home in time for the SB Rescue Mission Auxiliary Annual Luncheon AND the Goleta Valley Jr. High Talent Show…a big day!! It’ll take 2-3 weeks for us to get the results from Dr.Pornchai so we’ll keep you posted.
While I was gone, Dr. Corazza called with the results of Monday’s EEG!! (So fast). I’ll let Rolf explain it as my brain is mush… He described the results as “surprisingly normal” considering the seizure activity we were able to show him on video. In reviewing the MRI imagery taken at UCLA back in February 09, he saw evidence of an acute stroke in the left occipital region (which deals with vision), along with overall brain atrophy which could be indication of earlier insults (the term used to describe episodes of low oxygen levels in the brain). We’re aware that HLHS kids have smaller brains (which was confirmed in the CT scans at the ER) and we’re not sure if this is another way of expressing the “atrophy” observation. Add that to the list of follow up questions as we get our crash course in neurology. For now we’ll continue the Keppra for seizures, but we may want to run some chromosomal and genetic panels for the team to investigate further. Not like any of this is particularly “new” information as we had some conversations on this before Rudy left the ICU, but having to revisit it in such detail makes it feel like a new issue.
It’s been mentioned that Keppra can make people irritable and this may be an unfair week to assess this, but our little warrior hasn’t been at his happiest. He’s been junky from cold and the battery of medical episodes of the last two weeks have him a bit out of sorts. Safe to say that extends to our whole family–in your mind, you realize that HLHS includes unforeseen events popping up, but it is a bit disorienting to have suddenly returned to “medical deployment mode”. Here’s hoping things settle down a bit now…save for the monthly lab draw that awaits Rudy in the morning :-(.
At a quick glance, it looked like Rudy was getting ready for an action-packed waterpolo match this morning in the Neurologist’s office but actually he was prepped for his first EEG…it didn’t hurt him but it sure pained me to try to keep a 2 1/2 year old still and occupied for over an hour. Seriously, STILL. How is that possible? I did my best and pulled out every trick in the book but I’m not sure we got enough usable data. We’ll see…we have to wait a few days for the results. 🙂
Our week of “challenging tests for a toddler” continues tomorrow with our trip to Children’s for the sleep study. Rudy and I will head down to LA mid-afternoon to beat the traffic and the test will be tomorrow (Tuesday) night. Please pray that he’ll be healthy and the study is successful. He’s so much more aware than he was even last November during the first sleep study that I’m curious how he’ll tolerate all the sensors and lines to which he’ll be connected again. I’m praying he’ll fall asleep soon after we get to the lab before they even start connecting him to all the lines. The sleep study data is read and interpreted by a pulmonologist at Children’s before it’s sent to Dr. Pornchai at UCLA so we’ll have to wait a while for the results…it took a couple of weeks last time so we’ll need to be patient.
I just have to share these pics taken of Rudy and our neighbor’s dog,Scout, on Friday. Our other nurse-friend/neighbor Jannele offered to watch Rudy for us so the rest of us could all go to Olivia’s school performance of “High School Musical”. Scout and Rudy took an immediate liking to each other and Scout didn’t leave Rudy’s side…she even wimpered whenever Jannele moved Rudy to a different part of the house…tooooo cuuuuute!
Precious! Thank you, dear ones, for your prayers…we are humbled and grateful!!!
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.