All done!

Got buzzed shortly after the last post and figured it would just be the lab giving a status update. Discovered Dr. Dan was ready to give his report. No time to elaborate on that but the term “ridiculously good” was used repeatedly.  Not used to hearing that in a cath conference, so we’re a little bewildered.

We just got back to Rudy in recovery.  Leave it to the little champion to be here smiling and making little pig snorts as he comes out from under anesthesia! If things keep going smoothly we should be on our way home tonight. 

Checked in, Rolled and waiting 

A brief update while we’ve got time to post:  we had a 9am check-in here at UCLA so we were glad to be spared having to roll in the wee hours. We opted for the slightly longer drive down the coast (as we often do) as it just feels like a more peaceful start to a day like today. 

Demonstrating his ability to get excited about anything, Rudy asked repeatedly if he could bring wear his McQueen backpack and slippers to the hospital (and wore them for hours last evening after packing his toys).  Walked into the hospital like a boss. 


After check-in we moved to pre-op and got check-ins from the docs and kept Rudy occupied until they rolled him to the lab just before 1pm.  Gave us a thumbs up before he went through the doors:


Been close to three hours and we expect it to be quite a while longer. We’re OK with them taking their time. Thanks for keeping Rudy in your prayers. 

Amazing (the) Doctors

Rudy had two check-ins down at UCLA this past week.  The first was at the dental clinic.  I think we’ve mentioned here before that good dental hygiene and care is a surprisingly critical issue for heart transplant candidates.  In order to keep on top of this he gets to travel all the way to LA for what usually amounts to a quick checkup–but this one had a little more excitement than usual.  Some roughhousing recently led to Rudy losing a front tooth and left the one next to it pretty loose.  Upon further inspection in the dentist’s chair (you see where this is going, right?) the second was pulled as well making Rudy the embodiment of a fine Christmas cliche.

Thursday, we had his six-month appointment with the transplant team.  While Rudy isn’t listed as a transplant candidate, this serves as a means for the team to stay current on his condition.  Trips like this to LA are significant not just because of the appointment itself, but all that comes with just being in that place again–the memories evoked by stepping over a familiar crack in the sidewalk, recalling a conversation had at a particular lunch table, the emotions that come from walking by a bench that you once tried to gather yourself on, and the likelihood of running into some of the incredible people that were such skillful and compassionate guides during Rudy’s fight there.  Add to this the fact that Rudy was consistently emphatic about walking instead of riding in the wheelchair.  Not sure how much he knew about where he was but it gave me a lump in my throat to see him stomp down hallways with his mix of determination and mischief.

He had an extensive echo done and then we met with Dr. Alejos.  Nothing really significant to report in either direction there.  Everyone is extremely impressed by Rudy’s weight gain and developmental growth–Dr. Alejos always comments on how much he likes to hear the racket of an impatient kid waiting in the exam room and welcomed Rudy’s rambunctious energy.  He observed that no change is a good thing and didn’t see anything on the echo that would make him want to do a cath.  Even though he wouldn’t consider Rudy a candidate for any surgical intervention at this point, he also doesn’t see any imminent need.  We asked him if it surprised him that Rudy would be doing as well as he is and he answered, “If I was just looking at files and reports, I would envision a very different kid–but I know how Rudy fought his way through challenge after challenge here in the ICU.  There’s some things we just can’t define in medical terms.”

After wrapping up at the clinic, we decided to pop up to the 5th floor.  We weren’t going to bug people by ringing the bell to enter the ICU and only intended to take a lap around the hallways and let Rudy see the pictures of penguins and puffins we used to look at–until Dr. Andy popped out just as we were walking by and waved us in to say hi to the crew on duty.  So great to see Dr. Andy M, Dr. Andy S, Dr. Myke, Dr. Julianne, Jennifer, Roger and several of the nurses still there.  Rudy didn’t disappoint and strutted up and down the hallway, saying hi to everyone, wanting to play with their computers and machines and trying to run away from us.  Hard to put into words what the feelings were to see our seven year old strutting past his old room–in the unit where he was the first patient–and rooms where other kids were now waging their own fights.

Unbelievable.

There were several times during the seven months he was in the CTICU when I wondered if Rudy would ever make it out of the unit.  I don’t think I ever imagined I’d see him walking through it with his trademark giggle and chatter.  A sacred moment caught us by surprise.  So grateful for this place and the exceptional people there–and glad they could get a glimpse of the rich life the little baby boy they watched over seven years ago now has.

After our quick visit there, Dr. Rick left a meeting to greet us in the lobby and Dr. Dan (who had already read the echo report) and Dr. Greg came and met us on the sidewalk outside the lab.  In both instances, they were visibly surprised when Rudy walked up to them and we enjoyed visiting in between taking turns running after him.  All of them were so affirming of his progress and we were so grateful for the amazing people who have come along us in this journey and focus so much incredible expertise on Rudy.  (In fact, we were so amazed, we forgot to take any pictures…boo!)

We have, however, captured some Christmas fun so far this month…

Trish, Max, Olivia and Rudy braved the frigid temps (of about 55 degrees) and helped officially usher in the holiday season in the annual Santa Barbara Holiday Parade.

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Rudy was a super star!
Rudy was a super star!

Saturday included our family’s favorite Goleta tradition…Christmas at Stow House!!!  Santa recognized Rudy and greeted him with outstretched arms & great enthusiasm as Rudy walked up to the man in red all on his own.

Rudy studying Santa hard right before it was his turn to say hi.
Rudy waiting his turn to say hi.
Happy Friends
Happy Friends
Tradition!
Tradition!
Rudy having fun with fellow elf Emily.
Rudy having fun with fellow elf Emily.
So sweet!
So sweet!
Reingoats!
Visiting with the Reingoats!
Tractor ride fun!
Tractor ride fun…
...an extra long ride around the lake.
…and we got an extra long ride around the lake.
All aboard!
All aboard!

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Anticipation for Christmas is growing!  We have the SBRM staff celebration to look forward to this week and the arrival of both Oma and Wilson on Thursday.  With the bulk of Rudy’s key doctor appointments behind us, we are ready for some more serious Christmas fun.

 

 

 

Remembering Gwendolyn

We said goodbye to Gwendolyn Strong last weekend. She was an inspiring girl with heroic parents, Bill and Victoria. On our journey with a medically fragile child, we haven’t really found that “support groups” work. Life with a family member in need of round-the-clock care is uniquely demanding such that carving out time for structured activity and another meeting is very difficult. But we have come across people who serve as valuable examples and encourage us in our own journey by the way they navigate theirs. While life doesn’t allow for extended and regular contact, when they live in your town you can run into each other occasionally, you can touch base with a question about a doctor or local resource, and— perhaps more than anything—you can get a knowing nod, smile or sigh as you keep battling on.

Gwendolyn was an amazing child who lived an amazing life and, while it’s hard to look past how much a terrible illness robbed her of, it was a life so abundantly rich in love from friends, family, our community and the world beyond. But no one’s love was more evident than that of her parents—and I’m so glad Gwendolyn experienced that. Bill and Victoria were knowledgeable advocates who fought hard alongside their daughter. They never lost sight of the severity of her condition and the likely outcomes, but also constantly kept the fact that she was a little girl filled with wonder and personality in view. They nurtured, celebrated, trusted, challenged, inspired and pressed on. While their child’s condition would have justified narrowing their focus and attention only to their own family’s concerns, they looked broadly beyond themselves to other families facing similar struggles and poured energy into a foundation so that future suffering might be spared.

THE PART WHERE I (ROLF) MAKE THIS ABOUT ME: I’ve got no real eloquent way of wrapping this up and I’m very hesitant to go on as any grief I might be feeling is nothing compared to the Strongs’ heartbreak, but I guess since this is my blog about me I can do that here.

I was in a bad mood in the evening after the memorial service. At first I thought it was just frustration over a few things breaking around the house, but it became clear at 2am that things were running deeper. A few years ago, I remember coping with Nina’s memorial by going numb. Not sure I’m doing that now, but the thoughts that fly through your head at that hour can be torture:

Rudy is an outlier—like Gwendolyn—having lived significantly beyond what several doctors might have thought. that’s cause for celebration…but also makes you wonder how long such a run can last. you can be the best special needs parent in the world and that won’t save your child. with life dominated now by care needs, how could we ever adjust to life without them? not sure if I can list all the kids in our circle who’ve died. i can only think of three HLHS kids Rudy’s age we’ve been following since birth who are still alive. when did their parents know it was the end? what kind of warning will we have? we know of two kids who died on the transplant table last month. i hate that I go to kids’ memorial services and actually entertain what things I might include at my son’s.

Once the musings start, it’s kind of hard to stop the avalanche. Scary to stop all the activity of life to verbalize the raw questions we wrestle with and the feelings that accompany them.  I’m grateful to have fulfilling and meaningful work as well as commitments and hobbies that demand a healthy degree of focus and energy, but events like this can trigger a temptation to dive into them to the point where they become a distraction.  Don’t freak out–we’re OK.  This is our reality.  We laugh a a lot and embrace all the moments of beauty we capture on this blog.  Perhaps the fact that they take place amidst the undercurrent we don’t often talk about is what makes them all the more precious.

Still no eloquent way to wrap this up. Time to hug my family and gaze in wonder at the little half-heart warrior.

A Day at UCLA

It’s been awhile since I (Rolf) posted on the blog, but since I did the run with Rudy down to the UCLA Transplant Clinic, we figured I should provide the update.  With the end of the school year upon us, it seems like there’s some activity or event every day.  Thursday it was Livy’s turn as she got inducted into the National Junior Honor Society.  Trish stayed home for that and Rudy and I rolled out of town shortly after 5am to make it to UCLA for an 8am appointment.

Pretty, sweet and SMART!
Pretty, sweet and SMART!

Not long after we were underway, I realized that the CD case wasn’t in the car, but Rudy wasn’t bugged because his recent favorite–“Hola!” a Spanish-language Kid’s album of songs about the sea–was on board and entertaining us.  Enjoyable for both cultural and education purposes for a listen or two, but assuredly crazy-making by the fourth repeat (“Yo soy un pi-ra-ta!  Yo soy un pi-ra-A-A-ta!!)  (“Cuantos peces diferentes colores hay en el mar?”  How many different colors are the fish in the sea?  EVERY BLASTED COLOR!!–and there’s a verse for every one of them!!!)   My subconscious desire to bring an end to this caused me to accelerate faster than I normally would as was pointed out by the law enforcement official who pulled me over. Full disclosure:  I’m ashamed (but admittedly relieved) to report that my smiling son singing his Spanish fishy songs in his wheelchair spared me a pretty expensive ticket.  During the traffic stop, I was able to locate the only other CD in the car–Olivia’s Taylor Swift–and begged Rudy for a switch to even this, but “Hola” remained the soundtrack for our day.

Anyhow, we got to UCLA and the action started:

Rudy stayed nice, still and happy for his ECHO.
Rudy stayed nice, still and happy for his ECHO.

After that, we went to the exam room to wait for the doctor.

What waiting patiently looks like...
What waiting patiently looks like…

But Dr. Alejos was delayed up at the hospital…

This is what waiting over an hour ends up looking like...
This is what waiting over an hour ends up looking like…

Nurses were apologetic as they kept us posted.  When Dr. Alejos came, Rudy held the door closed and giggled when he couldn’t get in.  When he did let him in, Dr. A took a look around the trashed room and said, “This provides us with most of the information we need about how Rudy’s doing.”  He did go on to do a thorough review of meds, recommended a few changes because of Rudy’s weight gain (he just broke 40lbs–yay!) and filled in history since our last check-in.  We then talked through the Echo report on the computer and he liked what he saw.  The heart function looks good with very little valve leakage.  While Rudy has been previously classified as “Moderate Heart Failure”, Dr. A would still categorize him as “mild” (or maybe “mild-plus”). After a quick listen, he pushed out the date of our next clinic visit to six months–no need to come back sooner.

Getting his "good patient" on...
Rudy getting his “good patient” on…

Rudy knew it was time to go and before I could get his stuff picked up and his chair ready, he had already given Dr. A and the nurses his “See-Ya”s and headed down the hall.  Wouldn’t get into his chair (“no! no! no! Dad!”) in the lobby or by the elevator and walked all the way out of the building.

See Ya!
See Ya!

Before we left UCLA we had a few folks we wanted to see, so we made our way up to the hospital and enjoyed a quick visit with Dr. Rick (who is now the Chief Medical Officer of the entire Reagan Medical Center, but we knew him back when he was just the best doctor in the world).  Rudy’s got friends in high places!  After that we had a fun lunch with our friend Melanie in the Development Office.  (Panang Chicken from Mr. Noodle is really yummy even when you aren’t stress-eating it as an CTICU parent!)

Didn’t get to see Dr. Dan, but it really lifted my spirits when I got an e-mail from him while we were still on campus:

“Saw Rudy had an ECHO today here at UCLA – the stent we put in his aortic coarctation continues to look great with no significant gradient and his RV function has not changed much (still fine) but he has less hypertrophy in his heart since the stent and less tricuspid valve leakage (both good things).  His Sano with all those stents in it is still open but very small compared to his heart now.  Right atrium is big but not bigger!

How is he doing?  Were you seen by someone today?  Let me know if I can help with anything – just looking at his ECHO made me happy and hopeful so I wanted to e-mail you guys!

 Dr Dan”

So, a pretty good check in and report.  As we’ve been so amazed at Rudy’s stamina and progression, it is comforting to have the internal report be consistent with this.  We’ve had our share of the more confounding “not sure exactly why he’s doing as well as he is based on what his heart looks like” consults.  Rudy and I headed home and I can report that I did much better at obeying traffic laws (but the traffic and rain likely had a lot to do with that).  There’s much excitement to come in the next month and we’re so glad Rudy is at the point he’s at to really enjoy it.  Stay tuned!

A Special Moment At The Special Olympics

Oh my, So many BIG things going on in the life of our family….sadly, I’m experiencing some computer problems and I may have lost my pictures from the past year (Noooooooo! Praying they can be retrieved). I’ll have to wait to post a longer update but for now I just wanted to post this precious moment I captured yesterday at the a Special Olympics. Rudy was NOT motivated to participate….especially with the large crowd of cheering spectators yelling on the sidelines. He did, however, perk up when he saw Coach Galvan (his Adaptive PE Teacher) and all of a sudden he was all smiles! Way to go Coach! Way to go Special Olympics!

Full Metal Jacket

Thanks for praying us through a loaded day yesterday. Given the haste with which this cath was scheduled–and some of the past experiences we’ve had of cath results being a kick to the gut–we were a bit apprehensive leading into things and probably even steeling ourselves for some tough news.

Our anxiety was heightened by the discussions during pre-op. The primary goal was to see if there were any things that could be done to lessen the strain on Rudy’s enlarged heart. Signs pointed to the coarctation in his aorta (fancy doctor-speak for a tight bend which restricted flow–like a stubborn kink in a gardenhose). The team has previously tried to correct this by inflating with a ballon, but the bend acted like a crease and it popped back. The way to fix it would be to insert a metal stent, which is common in adult patients, but Dr. Dan couldn’t think of a patient as young as Rudy in which he had ever done it. The main problem is “getting the equipment to the jobsite”. The large stent and catheter they would need to do the job would need to be threaded up the femoral artery from his leg and there was concern it just wouldn’t fit. Additionally (and admittedly a bit disheartening) is the fact that the left femoral artery is Rudy’s last un-occluded path to his heart.  Even the most skillful intervention creates scarring and an artery can only be used a limited number of times before it becomes impassable, leaving more complicated surgical cut-ins as the only option. So the team needed to weigh whether any intervention was worth that cost, but they wouldn’t really know for sure until they got in and assessed things.

Needless to say our heads were spinning more than usual as we headed downstairs–but at least it took away our appetites and kept us from stress eating our way through the waiting. Good company and a lot of drop-bys from docs and nurses helped to pass the time. We got a progress call from the lab nurse around 3 hours in that they had stented the Sano shunt (which had narrowed significantly) and were finishing up–no action on the aorta. Not bad news, but we kind of prepared ourselves for a “there was really nothing much we could do” conference.

Just a few minutes later we got paged again and Dr. Dan was on the phone rattling through the positives: heart function looks better than everyone feared (perhaps the reason we suspect they rushed us in), they were able to open up the Sano to its original size, and now they had just finished a consult with Rudy’s surgeon and did feel that they should attempt to stent the aorta.

The significance of the moment only hits me in hindsight, but almost unnoticeably things shifted into the quiet intensity that one can suddenly find themselves in in the cardiac world. Just as Dan told me that Brian Reemtsen (surgeon) was coming coming out to speak to us, Brian stepped around the corner. We had a brief three-way exchange with Dan in my ear and Brian in front of me to make sure I understood what was happening and that they were in agreement. Dan finished with, “we will stop at any point if we feel it isn’t safe, but do we have your permission to proceed?” Of course, I agreed but it was only later that it struck me that this was not a routine procedure.  Even with the global consents we had signed in pre-op, there was something about what they were attempting that they felt like they needed specific consent for.

Dr. Brian spent time with Trish and I expressing encouragement over Rudy’s condition and that, given the strength of the heart muscle, it was very worthwhile to attempt a step like this to reduce the strain.  While any future surgical course is still unclear, successfully addressing the coarctation would have to happen first. Brian certainly wasn’t promising anything specific, but there was a note of wonder that we might be talking about that someday.

We had a bit more to wait before Dr. Dan showed up to give his report and walk through the imagery. He was very upbeat and told us right away that the aortic stent could not have turned out better. The arc had narrowed to 9mm and they were able to insert and expand a stent to 16mm–the size of an adult aorta–which means there is no pressure gradient across it and the blood flows freely!

As the nurse told us over the phone they were also able to fully rehab the Sano shunt to its original 5mm diameter. It had shrunk down to 2.2mm at it’s smallest point, but they used multiple stents and balloons to get it back to its original diameter. As this is supposed to be the primary means Rudy’s heart has to oxygenate his blood, it’s very good to have it free and clear (and gives us chills to think how tiny it had become). Dr. Brian also commented on how amazing that little shunt has performed–he hasn’t seen one last so long and serve a patient as well as Rudy’s has. That could raise concern that we are well past borrowed time, but Dan said he’s now given the Sano and the aorta “full metal jackets” by lining them with stents which will keep them stable, open and clear for a long time.

Dr. Dan was very pleased, but also wanted to get back to Rudy as he was very concerned about the femoral artery. He said they would watch that very carefully overnight as a bleed there would be a major issue.  As you can already tell, the time in recovery went really smoothly and Rudy was peaceful and content to lie still like he was supposed to for the rest of the day and slept through the night.   Among the more significant developments was that his 02 sats were consistently in the high 80s (compared to the low to mid 70s where they’ve been of late.  Since this was his first post-trache cath, it was also the first time he was intubated, so he had a scratchy throat and barely spoke above a whisper–until the moment he saw his big sibs at home had him squealing with his trademark joy.

We’ve learned to navigate this journey and all its big uncertainties by looking for reasons to celebrate and embracing them.  That’s what this day meant for us.  The big questions didn’t get answered and the major issues didn’t get resolved–but who knows if and when they ever will.  For now, we’ll celebrate Rudy’s armor-plated arteries and the positive step they are.

 

Family FaceTime makes hospital stays more fun--but nothing's better than being together in person again!
Family FaceTime makes hospital stays more fun–but nothing’s better than being together in person again!