Saturday was such a fun, full day…the Heart Walk and then swimming back at our house with out-of-town friends, then Livy’s soccer game and dinner out…by the time we got home even the big kids were moving slow and admitting they were tired. Ha Ha To put the significance of the day into a little perspective, I pointed to Rudy who was smiling and still had some energy and said “Imagine doing all we did today with half-a-heart!”…nothing short of a miracle. Rudy’s journey may not be defined by the “BIG” touch-of-God miraculous healing that one often prays for when dealt a life-threatening illness but there’s no denying the thousands of “little” miracles that have gotten Rudy to where he is now. Our friend Bob calls them “God’s fingerprints” and we have become pretty good at identifying them over the years. You have to be careful, sometimes God’s little miracles can be so subtle you’ll miss ’em if you blink or dismiss them as a coincidence…and sometimes they can be, well…creative. 🙂 I had an encouraging talk with Dr. Adele at the Pediatric Dental Clinic at UCLA yesterday and was witness to another “little” and very creative miracle!
THE BACKSTORY – I shared I was nervous about the dental consult…”really anxious” might be a better description. With so many other concerns to address over the years, Rudy’s dental care always took a back seat and as time passed, it became increasingly difficult to face his dental care knowing that kids like Rudy often have big challenges with their teeth. It felt daunting and exhausting (still does)…for many heart kids a simple teeth cleaning requires taking antibiotics 10 days BEFORE the appt. and a cavity filling can require a trip to the OR. I have tried to be diligent in brushing Rudy’s teeth but, of course, he fights me on it and every time I hold him down and jam the toothbrush into his mouth, I wonder what backward steps we’re taking in getting him to want to use a spoon and eat so there’s always a question in the back of my mind of what’s the proper balance. Blah, blah, blah…always something to consider…consequences no matter what you do…etc, etc, etc.
DENTISTRY 101 – So, I walked into the School of Dentistry building yesterday prepared for the polite scolding I knew I was going to get from the doctor about not brushing Rudy’s teeth enough, not flossing them at all and because he still uses a pacifier at times!!! Some of you may be wondering if the fact that Rudy is g-tube fed makes a difference in his oral health. I wondered that too. It may make a little difference but not necessarily for the better. The food he gets through his g-tube still travels to his mouth through saliva and the many medications he takes that can be bad for his teeth are also getting to them through the blood so even though very little is actually passing through his mouth, plaque and tooth decay are a big problem. In addition, the friction produced when we eat food can actually slow the build-up of plaque and because Rudy’s mouth isn’t active in that way, the plaque that is produced isn’t “rubbed” off or knocked off…which is why brushing is even more important.
THE LITTLE MIRACLE – Dr. Adele was very sweet and great with Rudy. We talked a bit and I shared my concerns before she examined him. Of course, Rudy wasn’t willing to cooperate and it took both of us prying his mouth open (it sounds worse than it was!) so she could get a good look at him but after a long, silent pause (and Rudy turning purple in protest) she said “Wow! He looks great.”. “What?”, I replied, “But you can see the plaque build up on his teeth!!”. Dr. Adele went on to explain that, yes, Rudy has plaque build up but where it is located is actually a good thing. If the plaque was located at the base of his teeth along the gums (which is typically where she sees it in cases like this), it would be bad and would need to be removed. But his plaque is on the surface of the teeth and has been there long enough to harden and become “calculus” (or tartar). Now, for you and me calculus is bad but for Rudy it is actually serving to create a protective seal on the surface of his teeth!!!! Have you ever heard of such a thing? For those of you more intelligent in the science of dentistry than I am, this may all sound very reasonable but I was completely blown away!!! Dr. Adele seemed a bit surprised too…she said that based on his medical history, she pulled all the standard OR consent forms prior to our appointment assuming we’d have to schedule a procedure. As she took the papers and put them back into Rudy’s chart, she said “Keep doing what you’re doing, mom, it’s working.” In case you missed it…that’s a big, fat fingerprint of God…a not-so-little little miracle!!!
Thank you, thank you for your prayers…the visit to the dental clinic was followed up with a visit to Dr. Nina (ENT) and she agrees it’s time to close the stoma. I left her office and went straight to her schedulers office and reserved a slot in the OR on October 15th!! Closing the stoma involves an overnight in the ICU for observation because Dr. Nina’s team will need to do a bronchoscopy to make sure the airway is all clear, cut around the stoma, remove all the existing scar tissue underneath and then stitch him up. Of course, we’d love to spare him all that but in the long run it will be SO GREAT to have the stoma closed…great for therapy, great for school, great for swimming and Olivia is thrilled he’ll be able to get baptized when he wants to!!! 🙂 So sweet!! I also got to check in quickly with Dr. Rick and Dr. Dan which is always an encouragement so everything I had hoped would come out of our trip to UCLA happened! Yay!!!
On a bit of a side note, both Dr. Rick and Dr. Dan asked me how the Heart Walk went (so kind) . After a quick recap of all the fun, Dr. Dan asked me who put on the Heart Walk. I told him the American Heart Association and he said “Oh yeah? I’ve gotten some grants from AHA.”! Knowing one of Rudy’s key cardiologists has received AHA research grants in the past makes Team Rudy’s fundraising success even more sweet!! 🙂
Rudy tolerated our long day well. He asked to go to bed last night and took a nap already this morning so he is definitely tired but he’s smiley and happy. I’m actually taking him in to see Dr. Abbott today because we’re going on Day 6 of a solely Pedialyte diet…he hasn’t been able to digest his feeds properly and seems to be battling a bug of some kind (although the other typical symptoms aren’t present) so hopefully Dr. Abbott can help us figure out what’s going on. Even though Rudy appears to be content, he surely needs more calories than he’s getting. Stay tuned…