Still basking in the afterglow

As I posted briefly on Friday night, this weekend I’ve been very aware of the richness we find in the unexpected.  We didn’t expect Rudy to join our family.  We certainly didn’t expect him to have to battle like he has.  I’ll go as far to say I hate that he has to battle like he does.  I’m quite certain I’ll never get to a place where I can wholeheartedly say I’m grateful for his condition.

But yet I’m so grateful right now.

Grateful that within that which has scared us like nothing else in our lives, we have found comfort.  We have found empathy and companionship that truly lifts the soul.  We have seen character, compassion and fortitude blossom in our kids.  We’ve learned about our own endurance and ability to function in the midst of extended challenge.  We’ve met people who amaze us in their expertise and devotion.  We’ve been blessed and been made aware of God’s goodness in brand new ways.

I am so grateful for Friday night’s dedication celebration.  Life can become a blur in the land of critically ill children.  Stints in the hospital can go on indefinitely.  One can emerge from one set of challenges only to face another.  The goal of survival can trump a balanced engagement of life.  Instead of feeling involved in things, you struggle with how much you’ve missed.

Having a clear milestone amidst the disorientation is precious to us.  We were able to look back and rejoice over what Rudy’s overcome.  We were able to set our sights forward and pray for his future—a thoughtful, hopeful prayer rather than a rushed and panicked one in a hospital hallway.  We were able to be together with so many precious people who have helped us in shouldering this burden.  So thank you to all for being a part.

In the calm weekend that has followed Friday night, I’ve enjoyed asking the kids what their favorite part was.  Olivia gave us permission to share her journal entry for Friday (below) and we clearly see that it was a significant celebration for all of them.  I so appreciated Walter’s observation on Philippians 4 that we find joy not because of life’s circumstances but often in spite of them.  I loved Uncle Bob’s specific word to Wilson, Max and Olivia on how he has seen them respond to the circumstances facing our family.  I loved the slideshow and the worship.  Missed out on most of the food because I was having too much fun visiting, but love that Sydney and her team blessed us with the leftovers (those PB&J bars have got to be illegal).

A future blogger perhaps?
A future blogger perhaps?

For those who couldn’t join us, we’ll work to get some pictures up and on-line shortly but in the meantime I’ll wet your whistle with the lyrics to the song we asked Marlin to sing (and in hindsight, we feel it was very unfair to ask anyone to try to sing in that room with very few dry eyes).  As Trish mentioned in the program, it’s a song we’ve played in our house repeatedly around the birth of each of our kids as it’s been our prayer for all of them.  All the more for Rudy on this week as a true smile has finally emerged:

Sunrise of your Smile–Michael Card

Reject the worldly lie that says,
That life lies always up ahead,
Let power go before control becomes a crust around your soul,
Escape the hunger to possess,
And soul-diminishing success,
This world is full of narrow lives,
I pray by grace your smile survives.

For I would wander weary miles,
Would welcome ridicule, my child,
To simply see the sunrise of your smile,
To see the light behind your eyes,
The happy thought that makes you fly,
Yes, I would wander weary miles,
To simply see the sunrise of your smile.

Now close your eyes so you can see,
Your own unfinished memories,
Now open them, for time is brief,
And you’ll be blest beyond belief,
Now glance above you at the sky,
There’s beauty there to blind the eye,
I ask all this then wait awhile,
To see the dawning of your smile.

For I would wander weary miles,
Would welcome ridicule, my child,
To simply see the sunrise of your smile,
To see the light behind your eyes,
The happy thought that makes you fly,
Yes, I would wander weary miles,
To simply see the sunrise of your smile.

 

The time of dedication ended with a prayer for Rudy from Philippians 4:4-7…we share a paraphrase of it below and ask, humbly, that you join us in praying these verses over Rudy that he may experience the richness of a life lived knowing the nearness and love of God.

Dearest Rudy,

Delight yourself in the Lord

Yes, and find your joy in Him

Be known for your gentleness and never forget the nearness of our God

And don’t worry – whatever is going to come

Just tell God every detail and the peace of God that no one understands will come to you

No, don’t worry

Just tell Him every detail and His peace will come to you.

A richness we’d have never known…

It’s time we should be getting on to bed, but I don’t think I can end the day without posting something.  Our time together at Rudy’s celebration reminded us that with the heartaches of this journey come a richness we wouldn’t have experienced otherwise.  We have felt such concern and support from so many over the last eight months, so it was so moving to have so many precious people in the same room.  Even more moving to see people make the drive from places as far away from LA, San Diego, Santa Cruz and Sacramento.  Thanks to all who came, to those who participated in the service and put on the reception.  More to come, but tonight our hearts are so full.  Thanks everyone!

…and now the fall

Perhaps to check the super-competence I was feeling in my last post, this morning was markedly different.  Got Rudy’s overnight feed ready last night and then drifted off to sleep expecting my alarm to wake me at midnight so I could start the pump.  I either didn’t set it or slept right through as the next time I looked at the clock it was past 4am.  Jumped out of bed, did some recalculating in my head to speed up the flow rate and then pushed start.  Around 5:30am, Trish brought it to my attention that I hadn’t connected the pump to Rudy, so his midnight snack pumped down the side of the crib and into the carpet.  I did another recalculation and set the pump on warp speed to make up for a good bit of the missed calories.  End result:  in 20 minutes, Rudy got all but 80 of the calories he was supposed to get over six hours.  Side effect:  I believe his eyes should recess back into their normal position by the time I get home from work.  Sorry, Rudy–some days Daddy doesn’t bring the A-game.

I don’t think Rudy will be any worse for wear, but feeding is the name of the game right now.  We were encouraged that he broke the 14lb barrier this week, so that’s headed in the right direction.  I guess we all marvel at how quickly our kids grow in the first year of life, but it’s even amazing for me to see the difference in Rudy since the pictures taken on his discharge day.  Must be that home cooking (when it actually gets to him)!

This morning (Thursday), Livy told us how much she wishes the dedication service was tonight.  Her enthusiasm matches ours.  We can’t wait to celebrate this milestone with so many of you who have prayed for Rudy and carried our family through this time.  In case you are joining us, we are hoping to have the reception afterwards outdoors, but even a nice night in SB can be chilly–bring a sweater.  Can’t wait to see you–Friday, 6:30pm.

Paging Dr. MacGyver

One more reminder–we are looking forward to Friday nite and the time we’ll spend celebrating and dedicating Rudy.  Always room for more and no problem with coming last-minute or without RSVPing.  If you need the info again, click here.  See you there!

I’ve come to see that this journey involves regular adjustments, some of which seem daunting at first, but in time we figure out how to manage them.  It was a relief to learn there was no rush to do the Glenn and that our summer wouldn’t include a sojurn in LA.  That’s a welcome adjustment, but it opens up a new challenge or two. 

To set context, let me stray off the subject and share that I fixed our pool cleaner this week.  It stopped working after the warranty expired but long before I thought it should.  I scoured the internet for information and parts.  I dismantled it and spread parts all over the workbench, defying the warning stickers that said “Do not open–no servicable parts inside”.  Sure, it took me three tries but Monday night I felt every bit the man as I reclined and watched it do it’s magic.  I have conquered.  What’s the next challenge, please?

That would be Rudy’s need for constant oxygen.  Previous to this, we’ve had tanks on standby in case he looked blue and needed a bit of a boost.  Being  looped into other families’ HLHS blogs and seeing some of their little fighters with the ever present tubes makes me believe we can manage this one and our gameplan is taking shape.  Admittedly, we’ve started out a bit neurotic in constantly checking Rudy’s sats with the pulse oximeter–because he doesn’t seem to turn blue like they say he should when the sats get too low.  We have bottles for when we go out (and learning to work the valves and manage leaks seems a bit more involved than it ought to be), but a new conversation piece in our house is the portable oxygen concentrator.  I guess having wheels makes it “portable”, but so does the refrigerator and we don’t move that from room-to-room.  We’ve decided a better solution is to couple 50 ft of hose and that way it reaches to almost every room in the house.  I just discovered a benefit of this is that Rudy (and we) get to experience more peace and quiet as he doesn’t always need to be next to a humming machine.

One thing we’re still figuring out is how to get him enough humidified air as this makes it easier to cough up secretions that accumulate in his lungs.  Balancing this turns out to be tough as too much mist lowers the amount of oxygen he’s getting.  The respiratory therapist came out from home health but didn’t bring the adaptor that’s supposed to handle this, so we’ve experimented with some work arounds.  Turns out, when we finally got the adaptor it didn’t solve the issue better than any of our jerry rigs.  Right now, we try to position two different masks on him at night so he gets the right mix…until he moves or yanks them off but I’m still working on an idea or two.  I think they have just what I need at Home Depot (betcha didn’t know they have a medical supplies section).  The one who conquered the pool cleaner doesn’t give up that easily.

Further challenges have confronted us in the pharmacological realm.  This may not apply to most everyone reading, but a few might be greatly helped to know that Aldactone and Spironolactone are the same drug.  At yesterday’s doctor’s appointment, Trish was asked if Rudy had ever been on the former (hard to answer off the top of one’s head considering his history).  In any case, she got a prescription for Aldactone and even checked with me if I recalled there being any in his stash before she dropped it off.  On pickup,  the pharmacist handed me a bottle of Spironolactone (we’ve got some of that).  I emerged from the rather comical dialogue that followed with the knowledge that this one medication goes by two names–this adventure would be so boring if there wasn’t a confusing detail or two thrown in.

OK, so they can call their fancy drugs by two (or three) different names if they want to, but my true vitriol is focused on saline right now.  We need irrigation saline for the whole suctioning process.  After checking a number of drugstores in the area, we learned that they can only provide it with a prescription.  This in hand, we discovered that it can be obtained for a mere $47 per liter.  IT’S SALT WATER!!!!  I put off the purchase and cussed like a sailor all the way home prayerfully contemplated this challenge.  I gained a new appreciation for the ocean as I looked out over a gazillion liters of what could arguably be classified as saline.  By the time I got home, my quest took me right to the computer in the hunt for a saline recipe, which I found in ample quantity (In summary:  1.  Get water.  2.  PUT SOME SALT IN IT!!)  I discussed this with the chief attending and, while she wasn’t hip to the $47 price tag, she also wasn’t game for any forays into chemistry.  Since I sleep in the same bed with her, I heeded the counsel and struck a happy compromise when I found entire cases on-line for the cost of two bottles locally.  Sure, they only sell to medical professionals but thanks to another website I’m now a licensed podiatrist in a small island nation.

There’s plenty to be scared of…laugh loudly when you can.

Wilson’s Graduation Speech

Been quite a week.  I once again fought the distracted angst that comes with trying to go about life as usual while Rudy is undergoing something at UCLA.  I found it hard to sleep in the quiet of our room without Rudy’s compressor humming all night—somewhere in the early morning hours I realized I could just turn it on without him there, but found that troubling for some reason.  It’s great to have him back home.  No trip to the hospital is without its souvenirs, but this time it’s mostly just band-aids and some pen marks where the team tried to find pulses and map out possible IV sites.

The most noticeable thing was that the travel and time in the hospital interrupted our routine of sleep and meds.  In addition, Rudy spiked a fever overnight (a common side effect of getting a vein coiled), so I sat up with him as he fussed for a few hours early this morning.  It’s coming up on 5pm and I’m fading fast…

I expect quite a bit of excitement to greet me on my return home as today was the last day of school for the big kids.  As if the day didn’t hold enough excitement, we woke to rain (very out of season in SB)!  From what I could overhear on the phone, summer vacation is being welcomed with vigorous enthusiasm.  As significant as this week was for Rudy, it shouldn’t overshadow the great job our kids did with all that was asked of them this year.  As this marks Wilson’s exit from elementary school, I thought it fitting to close by including the speech he gave at his promotion ceremony this week.  Quite the orator, my son!

 

Good Evening, my name is Wilson Geyling.  I’ve been at La Patera for two years.  My family moved a lot, so I was nervous as ever coming to a new school.  But by the first week, I knew that this was the best out of the three elementary schools I had been to.

On my first day I remember sitting alone on the obstacle course, trying to contemplate on how I felt about this new school.  Then Brandon P., Brandon R., Damien, and Anthony C. came up to me and asked if I wanted to kick the soccer ball against the backstop.  I kept thinking about how this was so rare, and I wasn’t about to pass this chance up.  So from that day on, I had my new group of friends at La Patera.  That year, fifth grade carried on with awesome Science lessons and projects, new Social Studies units (everyone was surprised when I became excited for Social Studies), the State report, and tons of other fun activities.  But nothing was a match for what would become the last trip to Monterey.  I thought this could never get better and I thought I was right when people said we were going to CIMI.  I kind of thought the whole school must have lost it if they were excited about going to Simi Valley and breathing smog for a whole week.  Once everyone started laughing, I knew I did something wrong.  And when they said Catalina Island, I shot through the ceiling.

So then sixth grade became a roadblock to Catalina, but it was a fun roadblock.  It was filled with country and endangered animal reports, math game boards, and the graduation which I’m attending today.  But the one reason I’ll never forget sixth grade is because during that year, my baby brother, Rudy, was diagnosed with Hypoplastic Left Heart Syndrome.  And for six months I had either a parent, relative or a close friend to come over and watch my siblings and I.  And it was for six months that I could come to school, to friends who would ask about Rudy everyday, and I could come and have some real fun.  Finally in April, all of that paid off when Rudy came home.

I want to thank my fifth grade teacher, Ms. Peattie, who retired last year, Mrs. Taigi, my sixth grade teacher and also anyone who worked in the cafeteria, who could bring light to a bad day with some dang good enchiladas.  But mostly I want to thank my friends, who are ready to encourage me and have fun—even if I need to explain to them that Jimmy Page is the guitarist for Led Zeppelin (not the Who) and they need to explain to me that a Lamborghini is a sports car (not an Italian cooking utensil).

I hope that one day everyone will be able to experience this great school. 

Thank You.

OK to Go!!!

Rudy's scalp IV
Rudy's scalp IV

 

Rudy had a stable night and is back on track with his feeds and meds this morning so we are good to go home.  Rolf had the presence of mind to pack the car with 2 tanks of oxygen “just in case” so I have enough oxygen to get Rudy home…we’re just waiting right now for arrangements to be made to get the rest of the home set-up delivered to the house sometime today.  Once that is confirmed, we can load up and hit the road before afternoon traffic!!!  It has been great to connect with our buddies here at UCLA but Rudy and I are thrilled our stay has been a short stop in the CTICU/PICU!!  We’re excited to head home and join in the “last day of school” fun with the big kids.  Summer is upon us…YIPPY!!!!

There is Good News and Bad News

     It’s well past 10pm and Rudy is finally resting back “home” in the CTICU after a very long day.   Rudy’s adventure in the cath lab lasted about 4 hours this afternoon.  He was fairly calm in the PACU right after his procedure but by the time he was transported to the ICU for overnight observation, he was worked up and irritated.  It took some methadone to give him some relief but that’s understandable as his last feed was 4am, his last meds were at 6am and he had a very full experience  in the cath lab.  He did great and I’m so proud of him.

     Rudy had a wonderful team with him today.  Dr. Dan and fellow Dr. Leigh along with our SB Cardiologist Dr. Harake conducted the heart cath.  They ended up gaining access through the groin and neck.  Dr. Judith Brill knows Rudy well from her rounds as one of the PICU attendings but she is also a fabulous anesthesiologist and we were blessed to have her caring for Rudy today in that capacity.  Because they went through the neck, Dr. Brill had to suture his trach in place as they needed to take his trach ties off and he came back with an IV in his forehead.   So Rudy has a number of tender spots this evening that, I’m sure, are pretty sore.   Dr. Brill was our full-service anesthesiologist today because in addition to her official duties, she removed a couple of chest stitches that were hanging around way too long AND she swapped out Rudy’s g-tube for a new and improved button mic-key with a less bulky, low-profile.  Her willingness to do that for us saves us a trip to the hospital in SB as the swap was a bit too involved to do in our GIs office.  Not to make it all about me BUT Dr. Brill sure helped make my life a little less complicated today and that’s really nice!  Ha ha   The plan is to watch Rudy closely tonight to make sure he rebounds from today safely and if all goes well, we should be allowed to go home late tomorrow afternoon. 

     There is much to process from today’s cath.  In general, I think we have reason to be encouraged.  As Rolf mentioned earlier, the team called for consent to do an angioplasty in the right pulmonary artery because they detected some narrowing of the artery.  They also coiled the right collateral artery which, I think,  means the artery was tied off reducing the overall blood flow to the lungs.  This will prove helpful at the time of the Glenn but will make Rudy look a little more blue in the short term.  Dr. Brian was consulted and given the information gathered in the cath lab and everyone is in agreement that as far as the heart goes, things are looking good.  Rudy hasn’t quite grown out of his shunt yet which means we don’t have to rush towards the Glenn.  In fact, if we can keep Rudy’s sats in the 70s, we could POSSIBLY wait until Rudy turns one before we do the Glenn!!!!  Waiting 2-4 months for the next open heart surgery would allow us valuable time to get Rudy fattened up and stronger. 

     As has always been the case with Rudy, however, we are facing a challenge unrelated to his heart defect.  Today’s findings also confirm that his lung function is still weakened and not what it should be.  He just isn’t strong enough to expand his lungs fully.  This is chronic for Rudy as he has battled this condition from birth but it doesn’t necessarily mean it will be a permanent problem.  It will take time, though, maybe even up to a couple of years so we need to be prepared for Rudy to be oxygen-dependent even after his Glenn.  For now, the team’s recommendation is to send Rudy home on a continuous oxygen supply.  The extra support will allow him to focus his energy on growing as opposed to breathing and it will help him sat in the 70s – a more preferable range while we wait for the Glenn.  Sending Rudy home on oxygen certainly isn’t what we hoped for out of this trip to UCLA but I’m all for giving Rudy what it takes to keep him comfortable and help him grow in preparation for his next surgery. 

     Rudy has proven himself strong and an overcomer on so many occasions.  I trust he will catch up and develop GREAT lung function in time.  Please join us in praying specifically for his lungs and muscle strength in his chest!!!   Tomorrow will also probably involve some more training in how to care for Rudy on oxygen so please pray that we won’t be delayed in going home due to logistics.  It looks like we’ll have to pack away our candles and stay clear of open flames in general for a season until Rudy gets past this bump!  ‘Just another little adjustment in the larger scheme of things.  As always, one day at a time…