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.
Rudy's Beat 
Ironically Brett and I are also podiatrists! we can gladly get you some saline anytime 😉 We are soo looking forward to seeing you all on Friday. It is also nice to hear the “normalcy” you guys have now. I am so happy Rudy is home and you will have a summer before the Glenn. Give Rudy hugs and kisses for us!! xoxo
Good thing that no one can hear me….you had me laughing hysterically. Love the way you put a spin on your daily “adventures”. Can’t wait to see what you come up with for the moist air. I’m sure that it will be just as great as the pacifier restaint system!
Best laugh of the day so far. Thank you! Small island nation, huh….sounds GREAT to me right now. Enough of JUNE GLOOM.
Diana
Maybe you can fix Rudy’s humidifier problem some Erector set parts? I believe you are well versed in their use from rigging your first car stereo with a few.
I think we can all learn something from you, Rudy has two of the best parents a boy could want……bless ALL of you, Nick’s Grandma
Sorry for the unsolicited advice but we dealt with the continuous o2 when Garrett was a baby…now we are only continuous at night…and thought I might have some “been there done that” advice.
Garrett never obliged with the turning blue thing either. In order to keep our sanity, we decided to keep a “sat checking” schedule…unless we saw symptoms of course. We check first thing in the am…school checks twice a day and we check before bed. Through doing this we have discoverd that Garrett has a pretty standard pattern…high 70’s in the am…working his way up to mid 80’s in the evening. This way we are able to pick up on relevant changes since we really understand his patterns. We also aren’t checking constantly but enough to keep us satisfied that we know what is going on.
On keeping the mask on…there are little tegaderm patches that keep the canulas or masks in place. Check for skin sensitivity though. We used medical tape for a while and Garrett got a rash. The tegaderm worked well for him and kept him from pulling it off. It is pretty itchy for them.
You are so right on the compressor..it is not portable. Long tube is way better the wheeling around a compressor. We had two issues with the long tube though…first the cat would chase it which was a pain because when the cat caught it the oxygen line would get taut really quick. We trained the cat out of this behavior. The other problem was when we took him upstairs the flow through the tube would change and his sats would drop. Dennis used to stand at the bottom of the stairs adjusting oxygen levels until we had Garrett’s sats where they needed to be. I guess gravity was affecting the flow, I think the length of the tube can also affect the delivery concentration.
It also took us a while to get used to the many names for drugs. I feel like a pharmacist sometimes. I have learned the names, classes, lingo and conversions. ugh…I feel your pain. The saline needs to be sterile…Listen to your wife..mixing up salt and water isn’t the same thing. 🙂
You all are doing awesome! You are right the curves come but you can learn to adapt to them. Ingenuity is important and it sounds like you and Trish have that in spades.
Continuing to check in on Rudy. He looks great!
Kathy
Thanks, Rolf, for your wonderful post! I know most of those issues are NOT funny, but your wonderful sense of humor made me laugh out loud! I just read a meditation that talks about people in dire circumstances finding the humor and cheer in those circumstances. Sounds like you are doing a fine job of making the best of your situation.
Wish I could join y’all for the dedication, but CA is off my travel agenda for this coming week and my better half objected to my going one direction and he going another–alone!
Give my best to your parents. All of you remain in my prayers!
Well, I”m just glad you didn’t cuss like a sailor, cuz none of us ever do that!!!
I’ve been looking a photos of you and your kiddos….can’t wait to see y’all on Friday!!!
You’re big on our hearts!
Wow! You had me laughing all night! I have a new line at home now…when my husband says “I’ll have to get it repaired” I’ll say “No! Just call Rolf!” He’ll love that one! You have to laugh because life is too short to cry about things….love you attitude! People don’t always understand how a situation like this can really change you for the better…
All our prayers for a great summer!
I’M laughing! figure out the mist thing, package it with the binky holder, and I figure your college tuition worries are done. 🙂
You guys are doing great, and I so wish I could be with you all on Friday, but will be thanking God for Rudy and the work He’s already done in his life.
thanks Rolf for the GREAT updates. I posted some great pics of you guys on facebook…have a great day on Friday, wish we could be there.
There was a lot said in that post, but my response is short and sweet. That was funny, enlightening, and your tenacity is pretty impressive. You guys rock! It was good to see Trish and the Rudster yesterday.
I join your other friends in saying what a great sense of humor you have with all you are going through. I too laughed and can’t wait to tell Brent that Home Depot also provides medical assistance!
So Rolf, you are a Podiatrist and Trish is the Attending Physician? Love it! You two sound like you are handling the Rudycoaster very well, and Rudy could not be more blessed! We’re with you in spirit!
I appreciate your humor going through all this. I was laughing so hard I was crying – partly because we can relate, but mostly because you’re funny. Thanks for keeping it in perspective!
Plenty of LOLs here. Love you guys and still praying.
You two are so very funny. Thanks for the laughs in the midst of this very busy time for you. So sorry I can’t come to this amazing celebration tonight, but my prayers are with you.