The Glenn Procedure

Holden, you're having surgery again. Don't tell your Mom.

Tomorrow marks anther milestone in Holden's heart journey. After a few weeks of NASA launch-like delays, the little man is finally set for his next surgery, the infamous "Glenn Procedure".

All in all, the Glenn is an operation that will tie off a few things to restrict blood flow to some of the lower areas of his body. (We really could launch into the intricacies of the Glenn, but we don't think you'd really would care to hear us attempt semi-intelligent doctor speak.) The goal is simple, assist Holden in his ongoing quest to gain weight. Today, sitting at a stout 13 lbs 6 oz, Holden is a far cry from that peanutty 4 lbs 13 oz baby that blessed us last fall, but is still a tad undersized, even for a Flynn.

We've been told that the effects will be seen almost immediately, and his overworked heart will scale it back a few beats, allowing his lungs to benefit. The doctor says that it will leave him looking blue for a couple days. We, like you probably are right now, began blasting images of this through our minds as that news was relayed to us.--->

I apologize for this corny, awful joke.

As we said in the Tin Man short, we know, no matter how intense these operations get, Holden is going to get through this. We stand by that statement. And while the anxiety and fear that comes with knowing our son is going under the knife will never subside, the negativity has. And always will.

Holden will be home in time for Father's Day. He'll pick right back up to where is he now. He'll return to sitting on his own. He'll continue to progressively drag his body across the floor like a snail (the experts claim this leads to crawling). And more importantly, he'll continue to forgo any other physical learning and demand his mom or dad hold his legs so that he might stand. (Someone forgot to tell Holden that standing was a few steps down the line, but he prefers the Franklin D. Roosevelt treatment.)

Funny story. The nurse at preadmission testing was trying to get Holden from a standing and into a seated position for his various tests. He insisted on standing, even though I tried to explain to him, that it's a progression for kids his age. Plank. Roll. Sit. Crawl. Stand. He remained standing for the anesthesiologist. And later, when we met with Dr. DeCampli, he stood and bounced. I said, "Can you believe this kid has a heart issue? He's been like this all day..."

It was only to stop him from crying at the hospital today,
but Holden choosing to stare down the pig who built
his house of bricks is a total metaphor. Right?

Thank you all for your support. Please keep Holden in your thoughts and prayers as the little man flexes his way through another operation.

Thank you!

Trey, Nicole, and Holden
(We will be updating Holden's status on Facebook and Twitter throughout the day. Please feel free to follow along)

Also, let me take this chance to remind you, we've got the Miracle Miles in a little over three months! Mark your calendars for September 22, 2012. Team Tin Man will dominate once again. TEAM TIN MAN UNITE!

Recap

This just in from the News Desk....Holden's surgery has been tentatively scheduled for next week. We have survived another round of scheduling meetings. Yes it was originally scheduled for this week but there are a lot of kids/babies already in the hospital that need surgery ASAP. This is bittersweet for us. On the one hand we had gotten in the mindset that surgery would be on Monday, then on Wednesday and had been able to wrap our heads around the fact our son would be having yet another open heart surgery...On the other hand he is healthy enough that they are able to push his surgery back. Holden had a cardio appointment this week and she keep saying how good he looked and how healthy he was, as he tried to eat the stethoscope from around her neck, so there's a feather in his cap. Thank you all for the kind words and prayers.

UPDATE: Surgery may now be in June, could be earlier, could be June...we wait

Last week's events:

Wednesday we attended the first meeting of the Mended Little Hearts, Orlando chapter. We met with other parents who's child has also had heart surgery and who have also heart the words "your child has a heart defect". It was nice to talk with other people who have been in our shoes and know how we are feeling and what we are going through.

Last Friday Holden was asked to be a special guest at the hospital for the American Heart Association's Heart Walk kick off. Basically it was all the team captains from last year. His video was shown and Trey and I were asked to say a few words. Holden was his usually self, flirting with all the ladies and hamming it up.

AHA Heart Walk Kick off- With Ann Ngo Heart Walk Dir

Pool Time

His mom put the Gilligan hat on him.

Note: This post was one I wrote for the website...LifeofDad.com. Dads, if you haven't joined, get over there now!

I’m generally not an anxious person, in fact, sometimes my wife will tell you I’m too relaxed. However, there were ten seconds last Sunday that almost got the best of me...We were dropping Holden into a pool for the first time.

It wasn’t that I feared my son would drown, or melt, or be allergic to water like the alien beings in Signs. My only worry was that my son would hate it. I didn't know how I would react if my kid went nuclear after touching the water.

6 Months Old! Just a Minor Observation

We are so out of tune with our surroundings. In today's iPhone and Facebook world a bear could waltz through our living room and we'd shrug it off to continue trying to figure out a way to make a "Beiber" on DrawSomething. Since Holden has joined our roster, that has changed. There are times when all that jazz takes a backseat to the most minute observations. The lights, lizards, noises that once graced our presence have returned. A rediscovery for mom and dad if you will.

I grabbed a tortilla chip out of a bag last night while holding the little guy. As the bag crumbled from my abusive handling of it, he stopped cold. Looked at the bag. Then me. Then bag again. I crumbled it again. Same reaction. I picked it up and handed it to him. ("cheega, cheega, cheega...") He attacked it, laughing as it made the crumbling noises we so often ignore. Basic cause and effect, so perfectly displayed by none other than an infant.

That is Holden at 6 months. Despite the small setbacks in his life, he's packed up the oxen and forded the river with best of them to discover anything and everything he can. While I probably would have complained about someone crumbling a chip bag in such a manner at a Subway or other high class establishment, I couldn't help but enjoy every minute of what Holden was offering me.

(“cheega...cheega...cheega”)

Trey

The Tin Man

As most of you know, Holden was born on October 11, 2011, the very Flynn friendly size of 4lbs 13oz. Shortly after, Arnold Palmer Hospital for Children came to us asking if we’d be willing to share Holden’s story with the masses. Nicole and I didn’t hesitate to say yes. We found a way to take a very tough situation and remain positive. It was important to us, and we wanted others who were in the same situation to know it is possible.

The creative mind, Jon Strong of Strong Films, recorded several hours of footage, everything from doctor’s visits to playtime. What became of it was a film unlike anything we’ve ever seen (granted, I’m a bit biased).

We know many of you have already passed this along to your family and friends. We appreciate everything each of you have done for us. If you haven't had the chance, please share it. Facebook it, Tweet, or whatever it. I can recall the hours before Holden’s first surgery in January, We stumbled across a YouTube video that someone else had put up. It was named “Anna’s Story“, and it chronicled the story a 10 year old girl who had same operations Holden would be going through over the coming months and years. We cried. Not because we were grieving over Holden’s condition, but because we were so excited to see that everything was going to be okay. It helped us so much.

Chances are, someone your friends or family might know might have just been told their child will be born with a CHD. We hope that this video has passed on the idea that there is a lot to be positive about during a tough situation. That positivity we’ve carried with us the last 10 months has been our GREATEST weapon.

http//:bit.ly/thetinman



Of course a BIG thank you to Arnold Palmer Hospital for Children and Strong Films for their work on this project.

Gaining Weight. That's Not a Bad Thing

It's not often that one sees weight gain in a human being as a positive thing. We've become a society of thin-conscious ultra freaks that are constantly setting our minds to the latest fad diet and/or drug to help drop a few stones off the ol' frame. Hey, I'm just as guilty as the next person. In fact, I can only think of a few situations where we encourage weight game...(Why don't you name them Trey?) Don't mind if I do.

1) You're studying to become one of the purest sumo rasslers the Earth has to offer and only weigh 180 pounds.
2) Your identical twin and you decide to recreate THIS MASTERPIECE



3) If you're stuck on Gilligan's Island and are looking to build enough girth to plug the hole in the S.S. Minnow. (You know because all the wood, and such that the island provides is not worthy)
4) Your name is Marlon Brando. (Won him an Oscar)
5) Your Halloween costume is post blueberry Veruca Salt
6) The text on that box of Special K is FALSE ADVERTISING, and you're going to be the one to out it.
7) The size 38 Versace jeans you threw 4Gees on currently sits in your closet, 2 sizes too small.
8) The high school kid making minimum wage working the front of the line on a roller coaster says you don't weigh enough to ride.
9) You're Mary Poppins, and all you want to do is open your umbrella because it's raining
10) Your Wii Fit board doesn't register when you step on it.
11) You get folded up in the seat at the movie theater, developing a skin rash as a result.
12) Your cannon balls are so weak your 6 year old niece schools you.
13) People mistake you for Daniel Johns.
14) Man vs. Food has made you millions.
15) You've purchased a digital scale and want to see how high the numbers can go.
16) The 14th hydraulic switch on your pimped out Caddy has stopped working. That switch just happens to tilt the car towards the driver's side.
17) You've been treated to an all you can eat buffet featuring every part of the pig except the snout...okay, it has snout, but it's MINE.
18) Paula Dean
19) You want your daughter to be on Toddlers and Tiaras.
20) You're Holden Flynn and couldn't gain weight...until now

See where I went with that! Holden gaining at a record pace. He might be 10 EL-BE-ESSES for 5 months. Amazin' I tell ya.

Holden Update

Friends and Family,

I want to start this off by thanking ALL of you for your support. The cards, the phone calls, the texts, and pictures of you in sporting your Team Tin Man shirts. Everything. It has  all been so amazing, and I can't wait for the day that Holden can come around and individually thank each and every one of you. 

We got a big medical update this past Monday. Lets start by putting the good news out there. Holden's first operation was successful. He recovered very quickly, and is back to being everything he was before going under the knife. Giggling. Talking. Farting. Kicking the wind without a care. He's just really good at being a great all around kid. That being said, there are some issues. You see, it didn't completely address the problem at hand. Holden's lungs are still taking on more fluids than they should.

The first procedure placed a small band (think $1000 zip-cord) around the pulmonary artery by his heart. The artery controls the blood flow to the lungs, and the band by restricting that blood flow decreases the fluids to a level that you or I might have. As the doctors told us before surgery, it's an inexact science. The band was adjusted while Holden was sedated to the dickens, and your body tends to react differently when you're active, so it's a tough call. We were told that in about 20% of cases, they have to go back in to adjust the band.

It was apparent a few days after surgery that it wasn't working as well as the doctors wanted. The original belief was that he'd grow into his band, but that's not looking likely at this point. As his heart works hard to offset the excess fluid, he has plateaued, and his weight gain has struggled the last few days.

Unfortunately, we're in that 20%. There is only one option from here. Go back in and readjust the band. Yes, that means he's going to need the first operation again, it is necessary to get it right so can move on to the next stage of getting his ticker fixed. 

We're scheduled for Monday. Holden was admitted to the hospital yesterday to monitor his feedings, and to make sure he doesn't lose any more of those precious ounces before the operation. Fear not, he's under the care of some of the world's best doctors, nurses, and support staff. He's currently housed in a corner suite with the attention of a small army of nurses. This isn't what anyone wanted, but it is what is needed to fix the Tin Man, and that is what matters.

 Holden is a warrior. We witnessed a few weeks ago as he recovered from his last operation so quickly that he was out of the hospital two days earlier than expected.

Okay, maybe not THAT type of warrior, us Flynns tend to run a little bit smaller. How about this?

One final note:

It also happens to be National Congenital Heart Defect Awareness Week (through Valentine's Day). Join us by helping to spread the word! Wear red. Facebook, Twitter, or Google + if you're Dave Christino (just messing buddy, you tried to get people to join) about Congenital Heart Defect awareness. Anything you can think of!

We'll provide updates on the little man throughout the weekend, and all next week.

Thank you all again.

TEAM TIN MAN UNITE!!!!

Trey, Nicole, and Holden.