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.

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.

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.

Trish just got a call from Dr. Leigh in the Cath Lab.  He said they were almost done and wanted consent to do an angioplasty as they detected a narrowing in the pulmonary artery.  We can deduce from this that, first of all, they were able to get all the access they needed and, second, that they were able to get good images of the heart.  So, the angioplasty would fall among the interventional steps I mentioned previously that Dr. Dan can do to improve Rudy’s outcome when it comes to the Glenn.  They’ll insert a balloon in the catheter to open things up.  We live in an amazing world!  Hoping my next post will be the one to tell you he’s out and Trish is on her way upstairs.

Trish just called and said they came and got Rudy at about 12:30.  There’s a good bit of prep before they start the actual cath, so I’m planning on at least a couple of hours before we hear anything and shouldn’t be concerned if it’s longer (he had a five-hour session in the cath lab once).  Trish wasn’t able to call with any updates before now as they were waiting on the 2nd floor where the big radiology equipment blocks any cell phone signals.  Rudy was waiting like a trooper.  Trish is really comforted by the team that’s on hand.  Dr. Leigh (cardiology fellow) will be with Drs. Levi and Harake, as will Dr. Brill (top notch anethesiogist and intensivist).  We are so grateful for these exceptional people we know and trust.

The last week of school upon us and life has been fun and full. The kids are looking forward to school ending this week and the days leading up to that seem full of field trips, parties and other celebrations. Tonight, we will join the ranks of proud parents as we attend Wilson’s 6th Grade Promotion—Jr. High is just around the corner.

In the midst of all of this, Rudy has been laying low. So low in fact, that we neglected to note his 8-month birthday here on Rudy’s Beat yesterday. Another milestone to note! He’s quietly getting fat and (we think) happy. This morning at the pediatrician he weighed in at 13lbs, 12oz, so his solid feeds are doing what they’re supposed to. This still has him well below the 5th percentile on the generic growth charts, but referring to anything to do with Rudy as “generic” seems out of place. He’s right where he needs to be on the Rudy Chart.

But enough for laying low—it’s time for a return visit to UCLA. Wednesday morning, Trish and Rudy will leave at 4:30am to head to UCLA for a 6:30am admittance. Rudy is scheduled to be the second procedure, but they like to have patients on hand and ready in case scheduling changes. This will be Rudy’s pre-Glenn catheterization, where Dr. Dan and Dr. Harake will enter from an artery in his groin to get a good look at the heart (an angiogram). They’ll measure pressures and flow in different areas and can even take some interventional steps in the event certain things are amiss. The team will use the information gleaned to develop a game plan for the Glenn, so we’ll await word as to how the next weeks are going to unfold.

Caths are commonly outpatient procedures, but in Rudy’s case we are being prepared for him to stay over one night for observation. As you feel led to pray for Rudy, please pray specifically for this—the procedure itself doesn’t cause us as much anxiety as simply having Rudy in the hospital for any length of time. From his history, we can’t help but worry if he’ll pull some kind of a trick or have some numbers amiss that will lead to another extended stay. Apart from this, we’re praying that a clear plan would emerge as we’re approaching June somewhat tentatively; unsure of when the surgery will take place and therefore unable to plan out very far. So, we’re looking forward to some clarity, but in the meantime we are so grateful for how special it’s been to have almost four full weeks at home with Rudy.

We’ll post updates as things unfold on Wednesday. I’ll be here in Santa Barbara. Fortunately, I’ll only have to battle preoccupation in my office for part of the day as I’ll be joining Livy’s class for a field trip at the zoo. It’s a welcome distraction and, given the how much of our absence the kids have had to accept this school year, I’m looking forward to time with Livy and her friends. I already have a good zoo joke ready to go: Why is a giraffe’s neck so long? Because it’s head is so far away from its body! Those first graders don’t even realize the comedic gold that awaits them.

Thanks for praying. Go, Rudy, Go!

We’re settling back in after our Memorial Day Weekend excursion.  The big kids are now in their last two weeks of school and readily reminding us of it.  Rudy had a visit with our local cardiologist this week who feels it would be wise to schedule the Glenn sooner rather than later.  As Rudy’s scheduled for a heart cath on June 3rd, he even went as far to inquire whether we just wanted to get admitted right then for the surgery.  Kind of sobering how close we are to the next round already.  Our preference would be to bring the school year to an end for the big kids without another Rudy episode–let alone we’d really like to have our dedication celebration before the next round.  This will hopefully be the game plan.  As it stands now, there’s not an urgency to the degree that a week or two would make a drastic difference but if the cath tells us something else then we’ll respond accordingly.

So for now, we’re going ahead with plans to celebrate Rudy on June 12th, 6:30pm and hope that everyone in and around SB (or beyond) will come and join us.  We envisioned having a bit more room to schedule this as a homecoming and end to the first chapter of the journey, but with the second close at hand, it seems even more timely to gather friends and family together to send Rudy off.  We’ve created an Evite page with information and to give us some idea of who’s coming.  If you’re reading this, you’re invited to come and to spread the word.

We’ve been wanting to have a dedication/celebration/homecoming for Rudy ever since his first discharge from UCLA.  We even had a date scheduled in May until his unplanned re-admittance.  As unpredictable as life is on the Rudycoaster, we’re going to give it a try.

Perhaps a more formal or fancy invite will come together via the web or other media, but for now please save the date:

JUNE 12th, 6:30pm

Santa Barbara Community Church

1002 Cieneguitas Rd., Santa Barbara, CA 93110

On-site reception to follow.

As so many people have embraced our family and have been praying for Rudy, we’d love to gather together, celebrate him and pray for the twists and turns yet to come.  I hope any and all who feel so led will join us.  As best we could, we checked this date with Rudy and he seemed amenable, so here’s hoping he doesn’t get fickle and make his own plans.  We’re expecting to do the cath during the first week of June so we’re hoping to have this celebration before we embark on the Glenn.

Looking forward to celebrating God’s faithfulness to our family!

Rudy gave me quite a start this morning as I was going through the morning routine of meds, suction and breathing treatments.  On coming back to his crib at one point, I noticed his trach was at a very peculiar angle off to the side.  It took a bit to figure it out, but his little wimpers made it clear that he was no longer breathing through the trach.  Perhaps in his displeasure over the morning routine, he managed to undo the velcro on his trach ties and pulled the thing just about all the way out.  All things considered, we stayed pretty calm–but Trish sure got up quickly and popped the thing back in there while I held him still.  People often note that we’re not easily rattled by some of the things our kids attempt (climbing to the very tops of trees, skateboard ramps or jumping off the roof into the pool) but I’d prefer Rudy not attempt a stunt like that again until the doctors say it’s time for that trach to come out.

Followers of Rudy’s Beat often ask us how the Mannings are doing.  They have been on our hearts this week as Tuesday would have been Katie’s first birthday.  I recommend you click over to their blog and read Alan’s post this week.  Though we certainly regret the circumstances in our families that brought us together, we sure are glad for such friends.