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...]

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.

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!

Testin' Positions



Sam, tryin' out Catcher. Is it a fit?



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... :-)

How to Make a Sign

View more PowerPoint from ceemarie

Memorial Day Weekend

So ever since Ron and i met, we talked of going camping. And as "these things" happen, time ticked along and we never got around to it...

But we did THIS weekend! The whole gang and then some! :-)

There is a local campground we've passed 100x on the route to Watkins Glen and Seneca Lake. Ferenbaugh Campgrounds. I remembered them and thought it might be a good 'first time' place to bring the whole family for camping. It's only 5 miles away so if we forgot anything crucial, or the kids, i guess, completely wigged out and we HAD to come home, we could. I'm happy to say, the only running home we did was to let Beegsley out, which was an excuse to bring back a couple things.

The van was PACKED to the brim, for only one and a half days. But we had to bring SO MUCH! Tents, blankets, coolers, camp chairs, clothes, Henry-comforts... well you get the picture. Ron masterfully fit in everything, and we were on our way by 3pm on Saturday. The weather was great. We set up camp on a cozy, grassy area under a coupla big trees bordered by a little creek. Really nice and cushy. And it was close to the office, pool and bathrooms. But don't forget, boys and going "#1" in nature go hand and hand.

We had several friends come to visit, which was really cool. Our friends Bethany and Eric, whose son Taigan became friends with Sam in Kindergarten (thus how WE became friends!) brought their three boys for the entire day on Sunday. All the boys get along great, and her three are just about about the same age as ours. We went for a hike, went swimming, tossed footballs and baseballs, went for a hayride and roasted s'mores! We all had such a good time together!

The boys did great with the whole tenting thing. Sam was a little scared the first night. All the shadows and sounds and cars and yelling was making him uncomfortable. Tommy, on the other hand, didn't care about all that, but did take a long time to actually get to sleep. The second night, after Bethany and Crew took off, the boys were out within 2.2 seconds of finishing their story books (oh yeah - had to pack THAT kinda stuff too!). Needless to say, Hank was easy breezy, like he had never left home, happy as a clam everywhere he was. The tent that Ron scored at the Re-Store for $10, in perfect condish, was big enough for all of us and Hank's pack-n-play! NIIICE.

We will do this again, for sure.

Tent Fun

Sam asked if Henry could play with him in the play tent. I was at the sink doing dishes at the time and said, "sure... that sounds like fun. Gimme a second." When i went to the living room to move Hank, Sam had already done the deed. I have since seen Sam carrying Henry. Most of you might think this is dangerous, but it's usually only from Point A to Point B, a few feet. Never to the CAR or something. And never while he's hooked up to a feed.

So i said, "huh... okay. Have fun!"

And boy... did they! Sam and Hank do indeed have a special bond, and I love watching it evolve...

"Sammy?.... Where ya goin'?..."

YMCA's Healthy Kids Expo 2012

Samson participated in a 0.75 mi run at the YMCA's Healthy Kids Expo on May 12. The boy LOVES running, and so any time i see something having to do with a run, i sign him up.

We left Hank at home with Nanny, due to the chilly morning temps, but T4 headed down to be there by 8:00 am. Sam and Thom had a good time "warming up" by running around the cones that were set up. Sam saw a couple friends that he knows.



Sam's race started at 8:30 and he was raring to go! Soon enough, he rounded the bend to the finish. He hasn't learned the art of sprinting with a few feet left to go. Instead he petered out! But it didn't matter; he still clinched 2nd place for boys in his age group, which meant receiving a big heavy shiny medal! He was SO PROUD of that thing, he wore it all day. He'da worn it during his baseball game later that day (talk about being worn out by bedtime!), but i said he had to leave it home.

Snow Day - April 23!

The Bond