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…

Update from the Cath Lab–Angioplasty

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.

Entitlement Issues!

I’m sitting here at UCLA grappling with entitlement issues…I never waited for Rudy during one of his procedures without the luxury of a private room in which to wait.  Here it is 2 1/2 hours since they took Rudy to the cath lab and I’m sitting in the little lounge area on the 1st floor waiting with the other commoners.  Ha Ha  Just kidding, I’m happy not to have a permanent residence here again but it is weird to be back in such familiar territory.  I haven’t heard anything from the team conducting the cath yet but since Rudy got such a late start today, I’m almost certain we’ll have to stay the night for observation.  Rudy has a great team of folks with him today that know him well.  Rudy waited patiently all morning and didn’t complain eventhough I know he was getting very hungry.  He is such a sweet baby.  I’ll post again when we hear something…thanks for praying!!!!

Off and Rolling

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.

Ready and waiting…

One cute early riser!
One cute early riser!

It’s 8:30am and we’ve been busy this morning.  We got up at 3:30 and got Trish and Rudy rolling to UCLA at 4:20.  Trish called at 6:45 to tell me they were there and all checked in.  There was some question as to whether the first case was on, so Rudy might be going early.  Trish didn’t have much time to talk but reported that, due to the different routine this morning, we forgot to flush his G-tube after the overnight feeds–duh.  We’ve learned that formula left sitting in the tube can clog to something close to concrete, so it had two hoursto cure in the car.  She was going to try to get it unclogged with a wire we have for that purpose, but at least she’s at a place where they have a spare they could just pop in.

So, I’m waiting at my office along with the rest of you.  More when we have it.

Countdown to the Cath

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!