Sorry for the delay between posts.  The “no news is good news” maxim holds true.  Been a great week here in Santa Barbara–some beautiful summer weather (sunny but comfortable in the 70s) came and we’ve been loving it.  Max has been at track camp and Wilson at kayak camp, so they come home every day with tales of adventure.  Throw in a good afternoon swim or two, end up sleeping well.  Grandpa went back to Kansas to start his next round of chemo and Grandma stayed to keep an eye on Rudy and the rest of us.

Rudy’s pediatrician appointment this week affirmed what we’ve been suspecting.  He’s feeding well and he’s growing (14lbs, 6oz).  We’re seeing steady development as far as his motor skills, too.  He looks all around now–instead of just looking down and to the left as he did when he got home from the hospital.  He kicks his feet and grabs at things with his hands–usually he’s most successful at latching on to his O2 line or G-tube, so we need to keep things tucked in as best we can.  Most mornings we find him having rolled over on his side during the night.  All of this is relatively minor for most babies, but when we think of how many months we watched him lying prone in the hospital, we get a kick out of these new developments.  Of course none of these have the emotional impact of his smiles, which he does quite often for us, but we’ll never tire of seeing more.

We’re excited to see Rudy make progress now that we are tied into the team from the California Early Start program, who has been doing assessments over the past weeks and laid out a plan of action for us this week.  I’m not sure if Steven Covey wrote any material for infants, but Rudy now has a set of clearly defined goals, each with it’s own action plan of clearly articulated steps.  Rudy may be behind developmentally, but how many infants do you know with goal/outcome/action plan sheets?  Slackers, all of them.

These plans will primarily be carried out by two therapists who will come to our house twice weekly.  Major goals we’re hoping to achieve by his first birthday include sitting on his own, taking food from a spoon consistently and developing some basic communication skills.  We’ll likely have some regular exercises to reinforce the sessions with the therapists and also appreciate your prayers for these areas.  As simple as these milestones seem, we will celebrate them heartily when we get there.  As so much of our attention has been focused on Rudy’s viability, it’s encouraging to be working on some normal baby stuff.

I’ve seen the camera out quite a bit lately so I suspect Trish will have some pictures posted shortly.  Thanks for checking on us.

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.