Tuesday, December 31, 2013

The Tin Man's Heart Watch Day #60


Thank you go Grandpa Andy and Grandma Evelyn for getting Holden his new floor mat. 

As appetizing as the idea of letting your kid stew around on the floor of an ICU is, we all feel better knowing there is something tangible between his skin and the ground.

Sunday, December 29, 2013

The Tin Man's Heart Watch Day #58

Holden is all settled in at Shands, and he has developed a personal alarm system. You'll see from the following two photos, he kid wraps his hand around one of the bars when he goes to sleep. When the bar moves, they're coming to mess with him. Quite genius actually.

Luckily, late night contact is minimal, and he's slept pretty well despite being someplace new.





Saturday, December 28, 2013

The Tin Man's Heart Watch Day #57



Holden was transferred via a land yacht to Shands yesterday. No issues, just closer to where they'll change his battery. This move was expected after Christmas was over. 


Thank you to everyone Arnold Palmer Hospital for Children for allowing us to stay close to home for the holiday. Thank you to all our family and friends who brought us food, the sweet sweet nectarine known as coffee, and just visited to check up on us. 


We'll have more about the move later! Team Tin Man Unite!

Friday, December 27, 2013

The Tin Man's Heart Watch Day # 56: Arnold Palmer Saves Christmas


Another amazing film by StongFilms.

 As a parent of a child who has spent two Christmases in the hospital, Arnold Palmer Hospital for Children has always been amazing to us. Jon Strong throws together some amazing, emotional stories. Thank you for allowing us to share the screen with a legend like Arnold Palmer.

Thursday, December 26, 2013

The Tin Man's Heart Watch Day #55 (Christmas)



We didn't get our Hallmark Channel Christmas movie new heart miracle (I was all ready to announce Ryan Gosling for my role in the made for TV movie.), but the day was still amazing. Thank you to the Arnold Palmer hospital for allowing Holden to escape the madness of the machines for a few hours to spend time with his family. Thank you to the support staff, nurses, and doctors for holding the potential furlough at a secret level that would have the Illuminati blushing. Thank you the the numerous people who made sure Holden was well enough to go home.

I have some pretty solid Christmases over the years, this one was without a doubt, the best ever.

Pictures below. - Trey

Tuesday, December 24, 2013

The Tin Man's Heart Watch Day #54(b)


 

These are our cousins Jordan and Charley. The other night this picture buzzed through my phone along with a message from our cousin Capresse.

"Jordan wore his Tin Man sort tonight. We talked about Holden's heart as we often do. Jordan said he would just give Holden his."

Background? Jordan and his sister Simone joined our family four years ago last week after being fostered by Capresse and her husband Kenny. While we'll respectfully decline his offer for his heart, it shows how awesome of a kid Jordan is. He's been through a lot himself, but always find a way to make everyone smile.

Merry Christmas!

The Tin Man's Heart Watch Day #54

Can you believe it is Christmas Eve? One of our family's traditions is to hit the streets and morph into judgmental Christmas light hawks. We're the type that halfheartedly throw lights on their own house, then roll around town seeking something better than our own grease job. Rarely do we find a house that has mastered "the look" making us, by all definitions, foul human beings when it comes to exterior illumination.

The usual trips would send us aimlessly wandering through neighborhoods discovering homes decked with a single strand of lights or with a couple inflatables piled upon other inflatables. It's nice, but never jaw dropping by our inflated standards.

We eventually make our way to the legitimately extravagant Lake Arnold Place. It is a quiet street famous for going all out for the holiday since I was a youngin'. Every Christmas Eve a parade of cars slowly rolls down the avenue, they leave their lights off and blare Christmas music as if the piped words of Ella Fitzgerald or Bing Crosby was actually Metallica. It sets the standard in Orlando.

Last night we went down that street a night early, blaring music with our window down the way my family had for decades. Only this time, we recorded it.

If we can't bring Holden along for our family tradition, we're going to bring it to him. This house featured in the video below has been a sight on that street since I was Holden's age. Here's to the lights!

Monday, December 23, 2013

The Tin Man's Heart Watch Day #53(b)

Superman

With Holden waiting for his new heart, we’re going to be spending Christmas in the hospital for a second year. Not that it’s a horrible thing. We’re still together as a family, and that is what is important. While we would certainly love to be home, there are noble list of reasons why being in the hospital on Christmas Day doesn’t have to be a bad thing. Allow me to share them with you.

 1) The holiday décor at the hospital is White House worthy. The hospital buys into the Trey Theory that there is no such thing as assassination of class via garland. If I had unlimited funds, I would wrap the entirety of my house in plastic attic smelling greenery. Garland is Christmas’s answer to salt. Garland is what Kudzu wishes it was. Team Garland forever and ever and ever.

 2) The hospital menu offers a selection of turkey, stuffing, mashed potatoes, and pie. Risking one's own health in the name of a major holiday meal is always a concern. If you’re like me you love to cook, but recognize that dish towels can make for a quick tourniquet. As most Americans know these days, having someone else cook meals for you can be ideal. If it wasn't, famous inventors like Ben Franklin wouldn't have invented restaurants like TGIFridays.

So when the Maître D who carts the tray up to the hospital room it should come armed with a placard that reads, “YOU CANNOT BE PHYSICALLY MAIMED BY THIS DELIVERED MEAL, BUT IN THE OFF CHANCE THAT YOU ARE, THE ER IS ALWAYS OPEN.”

As far as the quality of said meal? You can deal with the salmonella later. Later isn’t now.

photo 2(1)

3) You’re not judged for taking a nap. Nobody ever looks into your kid’s hospital room, sees you sleeping at 1pm, and immediately labels you as lazy. If I were to do that at the office? Unemployment. At my family’s on Christmas? Depending on who the witness is…Avoiding the cleaning process or intoxicated. Sometimes it’s nice to kick back and fall asleep at random hours. You’ll pay with jolting neck pain eventually, but again, later isn’t now.

4) Your tree probably won't burn down because engineering has given it the thumbs up. Ever see an old timey Christmas card and think, “What the heck were people thinking when they attached live flaming objects on a dying, drying pine tree?” Well, apparently trees can still catch fire for faulty wiring. Not at a hospital though, electronics require the pope’s blessing before they can get plugged into the wall. SAFETY.

5) Even if your tree burns down, it's not your house. Relax, the hospital rooms come armed with sprinklers.

6) The staff has to listen to you talk, because they have to be there. My family can run away from my hilarious jokes, but the nurses and support staff would need a new career field if they did the same. Besides, I think they find my kindly banter entertaining and a good way to drown out the fact that they’re at work. I’m like the hospital’s version of Chuck E. Cheese.

7) Rubbing alcohol makes for a harder drink than bourbon, or whatever else you like. Just unwrap 30 or 40 of these thingys and add them to whatever you happen to be drinking. There are a lot of risks. If you luck out and it doesn’t make you gravely ill, it probably will blind you. I preach it again, later isn’t now. (Note: We don’t suggest or encourage you drink alcohol anywhere in the hospital, especially not isopropyl alcohol. – Lawyer’d)
 
photo 1(1)
One of these thingys


Being serious though. We're here for a great reason, and while it isn't the ideal setting, we're together. I'm going to go ahead and apply 34 years of personal television Christmas special science to our situation...Santa will hopefully be delivering a heart tomorrow night, giving Holden a chance to spend his next 100 Christmases at home.

MERRY CHRISTMAS TO ALL! HERE IS TO A GREAT 2014!

The Tin Man's Heart Watch Day #53

Just a boy and his fishin' pole.


Sunday, December 22, 2013

The Tin Man's Heart Watch Day #52

(Warning the following pictures contain photos of a potato-y graphic nature)

 Potato Soup. Like a boss.

Saturday, December 21, 2013

The Tin Man's Heart Watch Day #51


"Your children are born and you love them. And you fall in love with them more and more each day..."


The new film from Jon Strong and strong films, creator of Holden's video "The Tin Man" for Arnold Palmer Hospital for Children. It is amazing. Please take a few minutes and watch and share.


(Holden was a bit sedated today because of some PICC line changes, but he's doing well, now watch this video and be prepared to go hug your children, pets, walls, whatever is closest)

Thursday, December 19, 2013

The Tin Man's Heart Watch Day #50


Holden's cousins stopped by to visit (Actually, to raise absolute heck in the atrium at Arnold Palmer). After circling the castle for 45 minutes we somehow wrangled them together for a second to get a shot in front of the Christmas tree. That still wasn't easy though.

Family...


Wednesday, December 18, 2013

The Tin Man's Heart Watch Day #49


Holden's heart buddy, Emma (a fellow red head, although with a lot more hair than daddy) stopped by the hospital for the Radiothon. She also came toting gifts for Holden, most notably, a fishing rod with accompanying fish. (Someone has been reading the blog! Thanks!)

The nursing staff recognized that no successful fisherman could ever make a days pay without a body of water acted quickly. Arrrrrh. Seafarin' he be.

Thank you to the Provenzano family for the gifts!



Monday, December 16, 2013

The Tin Man's Heart Watch Day #48

A million thank yous to our friend Jon Strong for getting the legendary Arnold Palmer to sign a Team Tin Man shirt. 

Jon was the genius behind "The Tin Man." and he stopped by the unit  and personally delivered this to Holden.

FRAME PLEASE.

The Tin Man's Heart Watch Day #47



On Monday morning we participated in our second Radiothon for the Greater Orlando Children's Miracle Network (benefiting Arnold Palmer Hospital and Shands Hospital). It's a great way to give back. We'll have the audio/photos up when we fish it out, but always a pleasure to be involved.

Kind of a teaser. 

You can catch Holden's vignette (recorded in 2012) here.


Sunday, December 15, 2013

Saturday, December 14, 2013

The Tin Man's Heart Watch Day #44

Holden likes cups. He will only drink from a cup. If it's not a cup, it's garbage. I guess we should be excited, it's a definite sign of maturity. The obvious line of thinking has to be, I want to be like my dad.

The problem is, he isn't a pro with a regular glass yet. In many cases he'll carefully raise the plastic chalice to his lips and allow the liquid to steadily flow into his mouth, no issues. In other, more extreme cases, he'll just go frat boy on the cup and soil everything in his immediate perimeter.

Recently, that problem has been fixed by some Genius cup that Nicole found at the store. It looks like a cup and drinks like a cup, but it comes with a lid that hides inside the rim. In healthy terms, it's a faux cup, designed solely to trick youngins' into believing they're in the big leagues now, kinda like training wheels on a bike or that pipe that comes with your bubble set.

Since acquiring said cup, Holden has rarely relinquished possession. It's like he's Uncle Si, from Duck Dynasty. And for those not familiar, Uncle Si always is carrying his green iced tea cup that his mom sent him when he was in Vietnam. I've put together a picture of the two to compare.




(We'll admit it, we're suckers for Duck Dynasty. Yes, we know the show can be repetitive at times. We know that a lot of it is staged. It's just funny, and in the end, is one of the few shows on television that presents a great family message.)

Friday, December 13, 2013

The Tin Man's Heart Watch Day #43


OH CHRISTMAS TREE!!!

Thank you to our good friends the Snow-patos (or is it Opat-snows) for getting a us a tree for Holden's hospital room. While you can't see it from this angle, he was excited. The problem is, he wasn't excited to cooperate with the camera. It wasn't even possible to snap the photo he'd just bury his head in his steering wheel. You know, just go ahead and enjoy the back of his head.

(Don't mind the mess, it's clean now)

Wednesday, December 11, 2013

The Tin Man's Heart Watch Day #42

I wish I grabbed more pictures of the creativity that comes with the night shift at Arnold Palmer Hospital. The Mayans would be amazed by some of these things.

Tuesday, December 10, 2013

The Tin Man's Heart Watch Day #41


Check out one of the video boards at Arnold Palmer Hospital! It greeted us on our way out Monday night. Of course we were completely delirious at this point and any sort of radiant light was met with squinted eyes and mere guesstimates of what was before us. So...if this is actually a picture of Nicole thumbs-upping an announcement about some sort of flu outbreak, let us know.

- Trey

Sunday, December 8, 2013

The Tin Man's Heart Watch Day #40

Sometimes (meaning regularly) the nurses have to change Holden's dressing around his PICC line (think, permanent sterile IV.) Because of the aggressive, territorial behaviors that Holden exhibits with such a change, they've had to give him a little something-something to keep him calm for the 10 minute procedure. The effects don't last long, but they'll throw him on the skids for a few minutes.

See below:




Friday, December 6, 2013

The Tin Man's Heart Watch Day #38

As a family we have walked Holden 4872.3 miles around the cardiac unit at Arnold Palmer Hospital.
When Holden was younger, we described them as parades. Parades included fake musical instruments created mom and dad's mouth. Parades included waving drive bys of all the nurses and doctors who were hard at work. Parades put us in control. Control has swayed. Therefore, parades are no longer cool to him.

These days, he's "Cruising the unit". He comes armed with a classy pink (but manly) Little Tykes car he steers through the halls like a bat out of heck. We've got to push it, but he doesn't seem to mind, in fact, if you stop for even a second he'll remind you to go.

Nicole, having a little fun, pulled a video of one of these rides.



Thursday, December 5, 2013

The Tin Man's Heart Watch Day #37

Mended Little Hearts hosted our annual holiday party last night. Thank you to Santa, the Orlando Magic, and all the heart families for making it out. Holden couldn't be there it obvious reasons, but they made sure to keep him there in spirit. It was an awesome gesture.

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Wednesday, December 4, 2013

The Tin Man's Heart Watch Day #36



(pipes up recorder)
(tunes voice)

♪ ♫♪ ♫ Holden Flynn is a quarter Jewish, not too shabby. ♪ ♫♪ ♫

Nicole is Jewish by way of her father's side of the family and over the last two years we've introduced Holden to the holiday traditions of both religions. This year Hanukkah started on Thanksgiving Eve and was overshadowed on this blog by the entire turkey we've been working ourselves through over the last 6 or so days. We promise, we didn't mean for that to happen. So...

With Holden in the hospital, there is the problem of lighting the Menorah as a family. For some reason candles are frown upon in the Pediatric Cardiology ICU. Something about flammable gases and massive 'splosions which can result in all sorts of paper heavy and lawyer friendly law suits. 

Luckily Target had a safety Menorah to allow us to "light" the candles and celebrate the holiday, with class. 

Inert wooden flames, to the rescue.

Happy Hanukkah! 

Tuesday, December 3, 2013

The Tin Man's Heart Watch Day #35


With his familiarity with the surroundings and wonderful support staff, we know Holden is comfortable at Arnold Palmer Hospital. On Day 35, he started redefining comfort.

Captions?

- I know your communication is limited, but please warn someone before you crack one off like that.

- Holden! If our doctors are required to wear shirts, you are too.

- Your insurance doesn't cover pedicures.

- Burt Reynolds just called...he is jealous.

- Mr. Flynn...you hit the call button?

- I'll leave your gruel on the sink.

- Excuse me. Those rails were designed solely for safety. Not for comfort. There will be no comfort.

Monday, December 2, 2013

The Tin Man's Heart Watch Day #34

Holden was still a wee bit sedated yesterday, so action was minimal at best. Mom and dad spent a good portion of the day cleaning the house.

He awoke for dinner though, His favorite part of staying at Arnold Palmer? Hummus. All. You. Can. Eat. Hummus.

Check out the hummus truck delivering the latest batch o' goods.


Notice the band aid on his arm? A sedated Holden can still remove an IV like a freaking fox. He thoughtfully placed it next to him on the bed and went back to sleep.

Saturday, November 30, 2013

The Tin Man's Heart Watch Day #33


Holden was sedated to get permanent IV line in him. His anesthesiologist even came in to help, ON HIS DAY OFF! Pretty awesome stuff.

As for Holden? He slept all day. He slept all night. He didn't even wake up when dad got erupted at the crazy end of the Auburn-Alabama football game.(Oh, and he didn't have to submit his brain cells to the Florida - Florida State game)

Friday, November 29, 2013

The Tin Man's Heart Watch Day #32

The angle makes it look like he's picking his nose. Amazing, huh?
During his appointment on Monday, Holden's doctors decided it was time for him to be under a little stronger supervision. Unfortunately his heart is struggling a little more than it was a few weeks ago when we were allowed to go home pending transplant. So, we're back in the hospital.

While there is no timetable on his release, the goal is to pump the precious heart nectar known as Milrinone through his veins and remove some of the stress from his ticker. If it's successful there is an outside shot he can come home for Christmas.

The good news? The fine folks at Shands and Arnold Palmer Hospital agreed to allow Holden to do this in Orlando.So, we don't have to pack the conestoga and head up to Gainesville just yet.

The great news? They allowed us to wait until Friday so we could spend Thanksgiving with him. We catered our days to Holden. SeaWorld. Thanksgiving. Yesterday? A trip to Lake Eola to visit the swans. Lunch at Jason's Deli (salad bar, brah).

Holden is doing very well right now. This place has all you can eat hummus. Hummus I tell you!

Thursday, November 28, 2013

The Tin Man's Heart Watch Day #31 (Thanksgiving)

Behold the wonderful feast of thanks! A holiday that celebrates everything we love as human beings. Loved ones, life, and cooking with butter.

Holden isn't what you'd call an "eater", in fact the rare moments he goes hand to mouth with any sort of foodstuffs calls for its very own balloon filled Macy's Parade. He ate a little, but we made sure to consume his complete share of the turkey and sides.

Regardless, it is a good day to remember everything that everyone has done for us the last two years. The doctors, the nurses, the support staff, our family, and our friends. HAPPY THANKSGIVING, we are so lucky to have you all in our lives. (More photos after the jump)...

The Tin Man's Heart Watch Day #30

With dad off for the Thanksgiving holiday, we went to SeaWorld yesterday. Earlier this year we acquired annual passes, which is nice, because the attention span of a two year old can best be described as "limited".

(1) It was chilly.
(2) The Polar Express ride was really cool, but of course we didn't take a single picture of any of that.
(3) Holden tried touching the penguins, which is frowned upon, apparently.

Check out the pictures below...

Tuesday, November 26, 2013

The Tin Man's Heart Watch Day #29

fryefam

Check out this interview on Life of Dad with NBA player Channing Frye. He was born with a CHD and talks about his experience, along with his work to create awareness. Pretty cool stuff.

The Tin Man's Heart Watch Day #28

Special thanks to Grandpa Andy who accompanied Holden and Nicole to Gainesville for his checkup! Unfortunately the Thanksgiving holiday really put a wrench into the week, and dad couldn't join in.


Monday, November 25, 2013

The Tin Man's Heart Watch Day #27

Pictures with Santa take 2. The Central Florida Gator Club hosted a holiday shopping event on Sunday that included a Gator themed Santa scene. Holden summed up the entire football season in 30 wonderful seconds. Santa hung in there. What a trooper.

Go Gators!


The Tin Man's Heart Watch Day #26


College football is a big deal in our household. It is that way because I was raised on the idea that every Saturday in the fall is Christmas morning. We were lucky enough to spend Saturday at my parent's house for slew of games. Smoked ham, Mac n' cheese, and green beans to boot. My dad even gave up his Lazy-Boy for Holden.

Saturday, November 23, 2013

The Tin Man's Heart Watch Day #25

"Do not pray for easy lives. Pray to be stronger men." - John F. Kennedy

Thursday, November 21, 2013

The Tin Man's Heart Watch Day #24

Holden has had well documented issues when it comes to gaining weight. Luckily modern medicine has helped us address those problems. These days he eats, but his favorite foods are all healthy. Take these photos as an example, the kid rejected cheese puffs, cookies, ice cream, and a butter-lard sandwich in favor of this here segment of cucumber.



Wednesday, November 20, 2013

The Tin Man's Heart Watch Day #23

Tommy Riles and the crew from Life of Dad put together this Thanksgiving video featuring several young CHD survivors. It's always amazing to see these kids understand the gift the medical professionals have given them. Check it out!

Monday, November 18, 2013

Sunday, November 17, 2013

The Tin Man's Heart Watch Day #21

 
A few months ago we purchased one of those bike carriages for Holden. The idea was awesome. We'd all pack up and go on a bunch of magical Sunday family bike rides to the Lake Eola Farmer's Market. The excursions would allow us to stock our pantry with local, organic healthy goods. Of course, Mom and Dad would be all in shape as a result.

Almost hours after we purchased the carriage, I took my new, used bike for it's first spin. After parking it outside of my cousin's house for the better part of 5 minutes, it was gone. Bikes don't last long on the thievery market.

If you'll ignore the obvious brochure conspicuous text safety violation he had a lot of fun as we took turns on Nicole's pink beach cruiser.

Nicole wore sandals on the bike? She's always told me that is a no-no!




The Tin Man's Heart Watch Day #20


We are alumni, and unbelievably diehard, loyal fans of the University of Florida. As a result we force our child to join the fray. We force clothes on him, teach him the various cheers (specifically "The Chomp"), and tell him all about the days of yore. Sadly, for the first time since daddy's birth year (1979) our football team is probably going to have a losing record.

With the game not kicking off until 7 Saturday evening, Holden was sawing logs by the time it ended, but I'd call this picture of him in his Gator jersey (taken around 6:00 pm Saturday)...

FORESHADOWING.

It was said last weekend, while the University of Florida doesn't field a great football team in 2013, they do field one heck of a pediatric heart transplant team.

Thursday, November 14, 2013

The Tin Man's Heart Watch Day #18

 

Gainesville check-up #1 of ???

As part of Holden's pre-transplant release we have to make our way up to Gainesville for bi-weekly check ups. (It's a little over an hour, and it has Burrito Bros. No complaints) The usually uncooperative Holden surprisingly held still for both his echo and EKG making the trip a lot shorter than we ever expected. Clearly a sign of maturity.