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.