August 19: Day +48

Ali misses her li'l sister a bunch...

A good day...

Kind of a relief to read that outta the gate, given how hairy it's been lately, huh? :)

Seriously. It was a good day. We started with our chest CT scan. This was to take a really clear picture of Bella's lungs to see if something was growing in there that might be missed by an x-ray. Results? Nothing brewing. Good news. Second, we headed over to get a cardiac MRI to get the best possible picture of Bella's heart to see more clearly what the nature of the obstruction is that was detected in her echocardiogram earlier this week. Results? We actually got them within a couple of hours! Turns out that if you are in the PICU, they read your results first. They didn't see any kind of structural blockage, but they did notice that the left ventricle is suffering from hypertrophy (it is enlarged). Good news is open heart surgery is off the table (that was one of the scary 'what ifs' they warned us of, but told us NOT to think about... yeah right). The bad news is that hypertrophy is usually associated with high blood pressure, NOT low blood pressure. In other words, it all doesn't add up (still).

Ah, the rat's nest of tubing needed to do an MRI...

Finally, we went back on Prisma without so much as a hiccup today, which was a nice change of pace from the past two circuit changes! I had a nice conversation with our attending Renal doc, Dr. Michael Mauer (no relation to Joe Mauer, Twins fans) during the circuit change. Just to give you a little background on the guy, he's collaborated on 85 different chapters from various medical textbooks over the years. He's been at the U teaching, practicing, and researching for over 30 years, yet he brings almost NO ego into the room. He's the one who really caught the LVOT obstruction this week.

Anyway, he mentioned that last night, he and his wife were watching "Extraordinary Measures." He asked me if I had seen the movie. I told him, "No, it hits a little too close to home for me," to which he smiled at me and thought that might be the case. I continued, "Every time I saw the preview, I saw Brandon Fraser's character as me and Harrison Ford's character as Dr. Wagner."

Dr. Mauer laughed, then added, "Well, it's a very similar thing you face, in that there is no body of knowledge out there to draw on. When we started doing pediatric dialysis here back in the 60's, we were the only ones doing it in the country, and we had to push through those same obstacles."

I replied, "Yeah, I feel like there is a culture of discovery here at the U. It seems like the U embraces being on the front edge of pioneering new cures and has been that way for a long time. We feel like we are part of that continuum, and as a result, things [related to EB in the future] will go better not just for patients, but for docs and nurses as well."

Then, he shared, "Yeah, I've been lucky enough to be on that same continuum where many of the things we struggled through and created here have now become the norm all across the field. That was great to be a part of."

Folks, to me, that's what it's all about. To leave this world enriched by your effort is the mark of a life worth living. We all leave a wake behind us, a legacy. I know that, thanks in part to Bella, our local hospital now has an official EB policy for care. That's gonna make it better for any other EB kids that follow. I am currently working with nursing and respiratory here at the U to improve best practices for EB care since there will be many many more EB kids coming here. Dr. Wagner and Dr. Tolar will be able to anticipate potential problems in other infants, thanks to what they learn from Daylon and Bella. To be part of that leading edge takes extra effort, but it is also very humbling and very rewarding.

So, for tomorrow, we begin to discuss beta blockers to try to give Bella's heart a break from squeezing so hard, and we also start to tackle what role the amount of steroids she is on might be playing. Nothing occurs in a vacuum, and we've been on a lot of steroids for a long time now. In other words, the puzzle continues tomorrow morning at 8:15 am in morning rounds.

Till then, thanks for all your prayers, thoughts, intentions, and wishes. They paid off. Today, we went three for three with your energy being answered! I confess that while I do pray every day, I rely on your prayers more than on my own. It's simply teamwork. Your sacred intentions and energy (whether you call it thoughts/intentions/wishes/vibes... it all comes from a special - what I call sacred because it means so much TO YOU - place inside you that you reserve for deep and important things) is what you can provide, and non-stop management and care is what we can provide. It makes for a win-win, don't you think? It certainly works for me.

Thanks again for your partnership in Bella's care. It wouldn't be the same without you.

Good night.

Always the goof ball...