Friday, June 29, 2012

1st Pulmonology Appointment

Henry had a follow up appointment with Pulmonology at Strong about two weeks after his heart catheterization. While it was a two hr long appointment, the outcome is brief: The first step Dr. Karen Voter would like to take is putting Hank on a 21 day long antibiotic. She suspects he has residual 'junk' in his lungs - bacteria and what not - and would like to clear that up once and for all and see what his oxygen levels are at upon completion. I asked her what she would like to see and she said, ideally, she'd like to see it be in the 80s again, if even low 80s. Hmm...

So that is where we are at as i type this. One week down, two more to go...

[The next possible/probable step: A bronchoscopy, which is a procedure that allows them to look into his airway through a thin viewing instrument called a bronchoscope. That'll get a clear picture for sure. Thing with this step is, he would once again be put under. We like to limit anesthesia with Hank for obvious reasons...]

Tuesday, June 12, 2012

Heart and Lungs

Smiley Guy, waiting patiently. The fish scene is hand-painted!

I, once again, am updating the blog from the Ronald McDonald House in Rochester. I've mentioned before the SA-WEET Mac up in the office/library. It makes for enjoyable updating!

Today Henry had a heart catheterization which checks blood flow in the coronary arteries, blood flow and blood pressure in the chambers of the heart and finds out how well the heart valves work. It also checks for defects in the way the wall of the heart moves. In children, this test is used to check for heart problems that have been present since birth (aka, congenital heart defect). (Thank you WebMD, for the clear explanation).

The procedure takes about two and a half hours, but the actual catheterization analysis takes about 20 minutes; the rest of the time is taken up by anesthesia. Putting him under, bringing him back out...

Dr. Miga, Hank's cardiologist here at Strong, brought me into a consultation room, shut the door and turned down the harsh lighting. This behavior fired up my Spidey Senses: "Uh oh... what did he find?"

Dr. Miga started off with saying that Hank's heart looked really good (for... well... Hank's heart). The pulmonary artery banding that he received at four days old is holding steady and looks great, doing its job and in place. His suspicions of Henry's left ventrical being smaller than normal, therefore potentially causing some challenges when it comes time for a repair game-plan, were confirmed. Not horrible, but not great. Dr. Miga also said that Henry's heart, with this banding, could continue working "well" for YEARS. It is in a good position to just hang out while docs consider their options for repair.

But then...

Dr. Miga dished me some news that explained why he closed the door and dimmed the lights.

While under sedation, Dr. Miga was not pleased with Henry's oxygen levels. He upped the oxygen and noticed that Henry was still only at 80% lung efficiency. [Pardon me if i screw up the terminology - this one is all news to me.] Basically, all of us 'healthy folk' breathe at 100%. Henry is only breathing at about 80, which explains why his O2 saturations are 'NOW' steadily in the mid 70s (again, you or I are/am at 100%. If we came in with even the 90s, there'd be great concern). We all know about Hank and his O2 levels. "L'il Boy Blue." But i guess we've all thought it was because of his PA band (the PA, btw, is the artery that carries deoxygenated blood from the heart to the lungs); because of his defect, we did not want TOO MUCH blood to go that route, thus the prohibitive band. Turns out his lungs aren't doing their full job to begin with...

... or, as Dr. Miga theorized, Henry's chronic congestion and mucous secretions and/or his severe run-in with RSV this past season really did a number (or more of a number) to Henry's lungs.

So maybe you're thinking "How could you not notice a child breathing on only 80% lung capacity?" I think it would be a good question. I guess the short answer would be "Henry's not taxed." He is not gasping for air, but he's also not RUNNING. Sure, he's a little BLUE, but as noted, this is baseline Hank. I know when he's BLUER than he should be, but by that point, it's something serious (reminders of last Father's Day's seizure discovery).

So the game plan: Let the heart chill and let's focus on clearing up his lungs. I'll bet oxygen therapy is in store, and maybe some meds. That's just me playing Nurse Wannabe in Pulmonology 101. A doctor from pulmonology is expected to call us soon to set up a consultation appointment.

Monday, June 11, 2012

Jekyll and...

Hank will apparently gladly teethe and enjoy his fruit through the "Mesh Fruit Holder Thingie" at school, but when i give it to him at home (even frozen, as a treat!), he chucks it. Whatevs, dude. ;-)

... although in this pic, he does seem more interested in the plastic!

Friday, June 08, 2012

Friday, June 01, 2012

How DOES She Do It?!...

[Best viewed full-screen (click on the little four arrows at the bottom right corner of the slide screen!)]

I had a lot of fun making this. It was kinda tricky remembering to document all the steps, since i'm so used to just going right along. I've been wanting to make a little show on this topic for sometime now... :-)