Rudy thought he had breezed through his regular checkup with the pediatrician today.
Then things took a turn for the worse.
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.
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.
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!