With A Heart The Size Of Big Bird's

I saved this a couple years ago when Patrick started his job caring for people with disabilities. That job is not easy, and it won't make you rich.

But Patrick has a secret that others could learn from - none of that matters if YOU LOVE WHAT YOU DO. Patrick goes to work and says he's blessed to be able to hang out with "his people" every day. The rewards and blessings his job bestows on him outweighs ANYTHING other people might see as negatives.

The secret to being Big Bird on the Death Star? Knowing you can make people smile with just your presence ❤ Even Darth Vader is smiling under that mask.

Patrick's height might not match Big Bird's, but you can be certain their hearts are the same size 💕

Ventricular Tachycardia

Patrick was shocked nine times on Friday, December 6, 2019. Nine. I was stunned when he told me that. I was present for at least one of them, and it's scary. He doesn't always feel them because some can be small. Sometimes he feels them coming and can warn me. They are like earthquakes - you know we're due for one but you don't know if it will shake the water in your glass or send your house sliding off its foundation. That's what happened Friday. He said my name and just seconds later he was growling and grunting, his lungs no longer drawing in air as he went into v-tach and his defibrillator did it's job. You can bet your butt I was slapping his face and calling his name, waiting for him to come out of it. Had it gone on longer than the 8 or so seconds he was under I would have started CPR. Almost as soon as he came out of it he told me to call 9-1-1. (On a side note - we don't always call 9-1-1 because he is admitted to the ER, they run some tests, tell him, "Your defibrillator did its job," and then they send him home. But Friday's shock was a bad one.) When a heart has a heart attack, what is left behind is often damaged tissue. The rhythmic beating of the heart is created by electrical signals that course through the heart, and when these electrical signals encounter damaged tissue they can scatter or over fire, which can send Patrick into v-tach. Patrick's implantable cardioverter-defibrillator (ICD) will shock his heart so it returns to normal rhythm, but too many shocks can also damage the heart. The procedure Ventricular Tachycardia Ablasion destroys the damaged heart tissue or circles the damaged area, causing scar tissue. This prevents electrical signals from passing through, decreasing the number of v-tach episodes that require shocks. Scar tissue doesn't conduct electrical signals. But the dangers of ablation are what concerns us - the risk of stroke. In Patrick's case he has multiple damaged areas on his heart that would require ablation. Remember when I spoke about the area to which the cardiologists connected that 6th graph, resulting in a clogged graph? That is just one of the areas of his heart that is damaged beyond repair. Multiple ablations on these areas would mean an even higher risk of stroke. His cardiologist has recommended skipping ablation for this reason and getting on the transplant list. Knowing the normal options open to patients aren't all open to him has been a tough pill to swallow. It says to us that his heart isn't just in poor shape. It truly is dying. It says they don't want to risk killing him on the operating table, and that skipping to just taking out the bad and replacing it with new is the better option. I jokingly ask, "Why couldn't it have been your gall bladder?" But the reality is I pray every night for that transplant packet to get to us fast. The reality is I take the baby monitor out of our bedroom and put it on the coffee table upstairs, so when I'm downstairs he won't have to yell for me or dial my number on his phone if he feels a shock coming. The reality is I lay awake at night wondering if I'm going to wake up to him cold and stiff. The reality is I wonder if I'm going to lose my best friend. It feels like we are walking on thin ice. That the string tethering Patrick to this life is thin and fraying, fragile enough that any wrong move could snap it and he'll be gone. You wouldn't know it by looking at him. He's still him. He's still telling the store employees that I'm shoplifting because it makes him laugh. He's still sharing his bodily functions with the girls even though it grosses them out. He's still trying his best to make everyone around him as happy as he appears to be. But on the inside he's scared. We're scared. Honestly - he's acting out like a child would, being a brat and living up to his childhood nickname Pat The Brat because it keeps his mind off the reality of what's going on inside his rib cage. I think about all the memes I see that say, "Be kind. You don't know what others are going through," and the ones that talk about how smiles can be a shield people hide behind. Those memes are hitting home today. We're still here. Still trucking. But give Patrick a hug the next time you see him. Hug that brat until he's uncomfortable. Get in his bubble. You know why. I don't have to tell you.

Released!

Patrick was released today!

They kept him longer than we thought because while he reacted well to the initial dose, the reaction they spoke of was actually a lack of a reaction. The cardiologist said that was good news. No reaction meant at least Patrick wasn't having a NEGATIVE reaction to the medication, which was the reasoning behind him being admitted to the ICU for observation in the first place, as opposed to a normal room.

But since he did have a significant v-tach episode while on the lower dose they decided to double it and keep him for longer. Again, his body showed no ill effects to the double dose which was good news. They even had him "test" it, which must have looked really funny in the ICU - having a grown man huffing laps around the place with a portable heart monitor, joking with nurses and working up a sweat. Not the usual sight for an ICU, probably. Patrick told me, "It's a really great group of people."

He does that - gets to know people just by talking to them in passing. Everywhere. All the time. Fred Meyers, Costco, the girls schools, etc. At Fred Meyers he asks the cashier if the party this weekend is at their house and if they will bring the booze. At the schools he demands a bowl of candy will be put out for when he visits. At Costco he knows the people who do food demos by name...

Everywhere...

Did I say they also plied him with coffee to get his heart rate up? Imagine normal Patrick hopped up on caffeine. I could barely handle our last visit.

The cardiologist, Dr. Shah, said Patrick has had nice EKGs on the double dose but the actual effects of the medication (Trikosyn) won't be known for a while. His pacemaker/defibrillator records information 24/7, so after a period of time they will be able to see if his arrhythmia's have decreased, increased, or stayed the same. The purpose of the hospital visit was to ensure if it threw him into horrible arrhythmia's, he was in the right place for it to happen. His "portable medic team" as Patrick calls his defibrillator, only works so well outside of a hospital setting.

Yes, Patrick's heart is still dying. He had a really good twelve years with his 6-bypass, even after one of the graphs clogged because they had attached it to a part of his heart that was dead. The body thinks, "This isn't working anyway. Let's clog it with junk." Unclogging that graph would have been a useless procedure.

With medication, his pacemaker/defibrillator, and improved heart function he has enjoyed raising his family, meeting thousands of people, starting a job helping people with disabilities, and forming lifelong connections with our church family. We knew it wouldn't last forever, but that the streak is coming to an end is still a shock.

The next step is starting the process to get him on the heart transplant list. He isn't at death's door, but we don't want to wait to start that process until it's too late. This may mean a temporary move to Seattle, or at the least several months of back and forth travel for myself and the kids. We will make it work for however long we need it to.

And while we pray for the health of our family and our loved ones, our prayers of a "new heart" for Patrick are now taking on a new meaning, and we acknowledge the gravity of waiting for someone to die for Patrick to get a second chance with us. This is not an undertaking we take lightly. Someone will incur great loss for Patrick's eventual benefit, and the thought makes me want to weep for that family.

For everyone who has helped or has offered to help, it means the world to us. We lost my father on Tuesday, and the grief we have been living with has in no way been overshadowed by the magnitude of what is happening in Patrick's body. It has compounded it, and the weight of the world is truly on our shoulders this week. Your prayers are appreciated, as is your support. We love all of you, and pray for all those who have ever touched our lives.

I will keep everyone updated on my Facebook, and may eventually start a Facebook page for Patrick's journey. Writing about it will no doubt be therapeutic for me, if slightly annoying for Patrick.

For a man who claims a preference to stay out of the spotlight, he sure does like to draw attention to himself!

Again, thank you for everything!

- Haley ❤️