Reason to breathe easier…

Rudy thought he had breezed through his regular checkup with the pediatrician today.

smiling at Pediatrician

Then things took a turn for the worse.

after shots

It’s relatively minor compared to all the other trauma he’s experienced, but no baby likes those blasted shots.  (I know you’re probably picturing gut-wrenching screams, but remember–as much of a tantrum as this looks like–it was dead silent because of Rudy’s trach.  That still surprises me every now and again when he gets really upset like he did today.)

But it wasn’t too long before he was the picture of resilience.

Smiling after shots

He’s got good reason to smile as Dr. Abbott gave him a big thumbs-up after his exam.  He’s continued to put on weight–in fact, we think he set a new record by putting on a whole half pound in the last week.  So he’s up to 17 1/2 lbs at a strapping 27 inches tall.  His lungs sounded very good and clear.  There’s significant relief for us in this realm as some of the docs decided it would be wise to do a test for cystic fibrosis because of some of the challenges Rudy’s been having with breathing and secretions over the last month.  The team at UCLA did a genetic test last winter which ruled out everything but one minor anomaly.  The consensus was that this probably meant it was 98% sure that Rudy didn’t have CF, but given the concerns about his respiratory function it seemed wise to be even more certain.  So this week he got the sweat test which came back negative as well.  Can’t say it didn’t produce a bit of anxiety for us to even have to run a test for another major health issue, but it’s great to have this ruled out.  It gives us even more hope that Rudy will one day be able to breathe on his own.  There’s not a major condition blocking him; he just needs time to get strong enough to go without the trach.

There are probably a few factors we can point to that seem to be helping Rudy breathe better.  Getting bigger and stronger through his nutritional regimen certainly helps.  There have also been some medication changes that seem to keep the secretions at bay.  The cooler weather might also play a role–he did seem to have a hard time a couple of weeks ago when it was hotter in these parts.

We also think his spirits were boosted by a visit in our home from Nurse Aliza, though he probably had a hard time recognizing her without her blue UCLA scrubs.

nurse aliza

But I humbly suggest that the most significant development has come from another fit of innovation.  There has been periodic mention made about humidifying things a bit for Rudy as a 2l/hr oxygen flow can dry patients out.  You might recall that we had a compressor from home health that gave him mist, but no matter how we tried to rig this to run in tandem with the oxygen concentrator we couldn’t keep his sats anywhere near where they needed to be.  A couple of weeks ago, it got tiring to watch him fight with such thick secretions so I started to think back on some of the setups I studied for days on end back in the ICU.  I suspect the “right way to handle this” would be to work with the home health company on this, but I wasn’t up for the prospect of navigating phone trees, getting the necessary order from the appropriate doctor and then arranging and waiting for delivery.  A second approach would be to find it on the internet (which was quick, easy and probably half the cost of home health), but it seemed that even $30 for a rather simple contraption that would take 5 days to arrive wasn’t preferable.

So, I went for a third option, which involved grabbing an empty saline bottle (which we have in good supply thanks to the last time I took matters in my own hands), getting some drip irrigation tubing from the garage, and spending 89 cents in the plumbing medical supplies aisle at OSH.  Less than an hour later after a bit of drilling and cleaning, the hum of the concentrator was accompanied by the pleasant bubbling sound of Rolf’s Wonder Humidifier taking that nice oxygen and giving it a sweet, sterile bath before it made its way to the mask.  Rudy thinks it’s yummy.

I held off reporting on this exciting innovation right away even though it seemed his secretions became much more manageable in short order.  They’ve stayed that way ever since we started using the RWH, so it’s a keeper.  Anyone know a good patent attorney?  Between this and the smashing success of the PRS, I’m not sure how much longer I’ll be needing my day job!

Rolf's Wonder can say "I knew him when..."
Rolf's Wonder can say "I knew him when..."

16 thoughts on “Reason to breathe easier…

  1. Rudy you look awesome, and what a smart daddy you have! I think he should look into a side business with all the cool stuff he comes up with. Still praying for you. Hugs and kisses.

  2. Wow! the rig is an amazing idea…didn’t know you had it in you Rolf!!!

    So proud of the big boy….almost one!!!

    Love and prayers!


  3. Whew! Relief at last. Good job, Rolf. We gave up on the water softener and called the Culligan repair man today. Wish you were here.

    Love to all, Grandma Jo

  4. Awesome, I was thinking to refer you to some engineer friends, but you cut to the chase. Love Rudi’s hair and his smile and the dedication all of you bring to what must be extremely challenging episodes of bringing up Rudi.

  5. WAY TO GO, Dad!! I think you might have a future in the medical device arena!!

    Rudy, I’m SO glad this contraption might help you breathe a little easier! You are growing so big and strong!! AND SO DARN HANDSOME!!

  6. It turns that Father does know best, I have found out that breathing is really good for you and should be accomplished by any means necessary, I would even encourage the lifting of his arms at different times to increase the air volume, like a game of yipee and the arms go up and everybody wins, the arms should stay up for a few seconds at least and could be done by some one who could facillitate him u ntil the day he could so it on his own

    Rudy wins yipee or yeah!!!!!

  7. Go Geylings! We are figuring out when to see you in Oct for one of Max’s games. Turns out one of our kidlets doesn’t care for the game of soccer much that she signed up for (she mainly wants the trophy) so we’ll miss a game one Sat. and head up there. Talk soon!

  8. We love “Rudy’s beat” and look forward to each advancement. We too are very impressed with your inventive streak. We will gladly brag that “we knew you when”.

    Rudy is adorable and I’d love to be there to get a “personal smile”

    Love you and continue to pray for Rudy and all of you.


    Jan and Lyle

  9. Rudy looks so good and just amazes me constantly, as do all of you strong Geylings. I keep those prayers going every day and am always inspired by your faith!!!

    God bless, stay positive and be strong!!
    “I can do ALL things through Christ who strengthens me!” Phil. 4:13


  10. hey guys!! so happy that rudy looks fabulous.
    btw, i love the custom bubble humidifier!!!
    Just wanted to reccomend switching over to sterile water vs saline. Saline albeit is wonderful for removing secretions. but, continous use would be a tad bit much since it has a tendency to sometimes pull jus a lil too much moisture to the lungs. : )
    fight on!

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