Tuesday, August 25, 2015

Update on Dad

I know Mom and Dad probably don't have much time to post updates on Facebook and such, so I'm trying to keep up here.

Dad is continually doing better every day, and his numbers are getting better as well, he is doing laps every day around the unit, and they are soon talking about putting him on the Freedom Driver. (The backpack)

Just in case you don't know how the Freedom Driver works, I'll tell you. The Freedom driver is a 25-30 pound backpack, that is connected just like the machine he is currently on. The Freedom Driver is also run on batteries just like the machine, but has a much longer battery life. Since the Freedom Driver runs on batteries, its not like you can just "Run out" of batteries, they have a secondary battery, a backup battery, and a backup-backup battery, then guess what? They also have a backup-backup-backup battery for the *first* Freedom Driver. Yes, we do have to carry around a second Freedom Driver that will serve as a backup for the first Freedom Driver. Then that Freedom Driver has a secondary battery, a backup-battery, a backup-backup battery, and a backup-backup-backup battery. Lots of backups. But that insures that if anything goes wrong, there are lots of backups that can fill in if ANYTHING goes wrong. Also, here is the worst case scenario:

Electricity goes out, we forget to charge the batteries, and the first freedom driver fails, and the second also fails. There is a crank where you can manually pump the freedom driver, and that does not fail, it is old fashion -no electricity involved.

So I hope that eases your minds a bit, even the worst thing that can happen with this piece of scrap metal, you can still keep it running. The beat, will go on.

You've probably seen my mom and dad use the term "Rejection" or the body rejecting the heart. This is where, the body sees the new heart as a intruder, and tries to kill it, like it would try to fight off a cold or the flu. The good news is, there are medications to control this, and pretty much always work if you keep taking the rejection pills.

You have probably heard that Perry did not do well in his surgery with the heart transplant. I know what I was thinking when I heard that "Does that mean since Dad did well in the TAH surgery just like Perry did, does that mean Dad will do just as badly in the heart transplant as Perry?"

It does not mean that Dad will do just as badly as Perry, and even if he does, Perry was pretty much a worst case scenario for the surgeon and still is getting better every day. Heres the thing: Dad has close to the same heart problem Perry had, but they both have different types within that. Almost every type of HCM is unique, and that sometimes makes it hard for the doctors to adapt to each individual HCM patient. Just because Dad and Perry are almost in the same situation, that does NOT mean that they will react to the surgery the same.

I hope that this post answered most of your questions, thanks for reading!

Saturday, August 22, 2015

Back To School Paper/Update/My Thanks/ Funny Things

Back To School Paper
What I did this summer.
Teacher: "Alright Jaime, great paper! Cant wait to see the edited version! Now, lets see here, who's next... Richard! Come up here and read us your paper.
"Yes sir."

"What I did this summer. My summer started out normal, just as it should be. Everything was great, and my dad going into the hospital every 6 weeks to stay for 2 weeks was normal, no issues. My dads heart problem: Hypotrofic-cardeo-myopithy  (I totaly spelled that wrong, dont judge me.) was getting worse, so they had to turn him into a cyborg. My dogs problem, also getting worse. Her brain and how she thinks is CRAZY, and anything metal she licks. So we are going to have to take her to the vet. Then all of my family living all around the US is traveling to help us. With our crazy dog."

"What in the world?! Richard, go to the principles office! This is insane! Right a REAL paper next time!"
"Bu-bu-but sir, this IS a RE-"
"I dont want to hear anything of it! What is Hypotrofic-whatcha-makallet anyway?! SCRAM!"

Dad yesterday was not doing good, probably one of the worst days. That was mainly because he had a "Brown Day" (He used the toilet a lot, or when he couldn't make it there, the chair.". However, in the next few days he should feel much better because of that, and be able to eat. His Cath is compeletly out, and he is walking on his own, as of yesterday (one of his worst days, let me remind you) he did 3 laps around the unit.

My Thanks
I would like to give my thanks to the following people, for spending the night/offered to spend the night and have /are going to come to help us out.

Dominique/ Michelle
Aunt Vicky

Also thanks to all of the people that have donated, and given snacks, I would try to list all of your names, but there are too many of you :O (You scare me with your size and numbers)

Funny things I've heard in the past week or so:

Pokemon, turns cute little creatures
Into slaughtering death machines.
From Sean
Ipod returnal:
"Hi, would like to return this "Ipod" 5th Generation."
"What problems occurred with the Ipod 5?"
"Well, Uh, when I applied the new apple update, it sorta..."
"It disenagrated"
"Its now a pile of metal dust."
"I would like to return the pile of dust please, I kept the headphones and charger."
"Wait wait wait, you want to return, that pile of metal dust-"
"Correction, your pile of dust. Expect it on monday."
"Wait, WA-*Call Ended*
From Brennan

Also, a very, very, very very funny video (warning, violence may occur. )

Thanks for reading!

Tuesday, August 18, 2015

The biggest disappointment, and the best day.

As you know in the last posts, I have been telling you and everyone else that the wait to recover to get BACK onto the transplant list is 2-8 weeks. I was wrong.

Yesterday we were told, "No, not 2-8 weeks. 3-6 *months*, we don't even start talking about putting people back on the transplant list until after 2 months." That, was what we were told yesterday. Now, this is what is going through our minds, "He wont get a heart for another 3 months at the least, it'll probably be after Christmas before we get the first one come in to dad."

This morning, we are welcomed by a phone call. Mom answers and I go back to sleep. About 10-20 minutes later mom comes in and says "Dad has news for you guys" Dad said the surgeon that put his TAH in came in earlier, he said "We put one person on the transplant list today." Both of mine and Brennans heart stop, "David, we put you back on the transplant list today, you can now get a heart at any time."

Of course, recovering from the surgery in 5 days is CRAZY, this is faster than Perry, he recovered in 2 weeks. Now today is a great day, go have a beer or if your under-aged grab a soda and have a great time today. I myself, am going to grab a beer. (Heh heh heh...)

Thanks for reading,

Saturday, August 15, 2015

The Stress, its there...

The stress is here for all of us in stressful times, it comes and gobbles you up. Stress is getting to my whole family, and you cant stop it.

Dad is doing very good, and is still doing better and recovering faster than everyone (With the exception of Perry). Yesterday night I asked if they think dad will recover just as fast as Perry (Recovered in 2 weeks, went home in 2 months) The person looked at my dad, and nodded her head. "Yeah, keep up the good work and he should recover that fast." So that is a relief to my family, knowing he might have a heart in 2 weeks, and be home in 4. That is our hope, thanks for reading.

Friday, August 14, 2015

The Break, and the light at the end of the tunnel.

Today, I'm about to go see my Dad, MY Dad that has recovered faster than most people. My Dad and Perry are the only ones that have recovered this fast from the TAH surgery, so all of us are crossing our fingers that he will recover just as fast as Perry (2 weeks untill he could be accepted to get a transplant, and another month and a half before he was let loose.). Most of the nurses and Doctors have been in and out, astonished at how fast everything is passing by. Most of the time, the people that get this surgery don't wake up until the day after.(And even then, most of the time they are not themselfs) Most people don't get their breathing tube out until the 3rd day. Most people cant talk for atleast 4 days. My dad did all of those things in the first day, and was awake an hour and a half after the surgery(and was himself, I could tell by the tongue sticking out and the heavy metal sign. Also, he made the number 42 with his hands.) , and had his tube out 6 hours after the surgery, and was breathing on his own.

Yesterday, and today, I am very proud of my Dad, and I'm even more proud to call him my Dad. This fun loving guy, was given the wrong set of cards when he was born, but instead of getting depressed, or not doing what he needed to do, he traveled with us to get to where he needed to be. He fixed his own food so he could eat healthy, he kept up with his weight, and his blood pressure every day, and sometimes, he knows more about his own problem then some of the doctors know. He has done EVERYTHING he could possibly do to give him a better shot at this, and it finally payed off. I am proud of my dad because he has done all of these things, and is pushing through faster than most people.

Last night was a happy night for my whole family, my Mom's side of the family was gathered in a house yesterday, waiting for the call to hear that he was OK and was out of the surgery. My Dad's side also was gathered, and waiting for that call. Both sides were constantly giving money to help with the medical bills and every day expenses we struggle to pay off, both sides were constantly texting and giving love and assurance. And, it was not just our family's that have done all of this. His friends, our friends, have given more and more money, and offering to travel to come stay at the house and take care of the dog and us, everyone, EVERYONE we know has given such love that the four of us are dazed at how many people have offered to give.

Last night was a good night, but it is not over yet. Everyone is happy with how last night turned out, but we still have a long road ahead of us. We have the recovery to get through, and we have a crazy road ahead of us. That is all the time I have right now, I plan to keep on posting.
Thanks for reading and all of the support!


Monday, August 10, 2015

"We have done the impossible, and that makes us mighty."

I'm going to take this one post and brag about myself and my family, which I don't normally do, but I think today can be an exception. Today my dad is making the journey to the hospital, where he might remain for 5 months after his surgery.

Just in case you missed what is going on with my family, I'll give you a recap.
Dad's organs how now reached the limit of what they can do to keep up with his "Bum Ticker", and now he has to save those organs that have kept on going after not getting enough blood, he has to get a heart that can keep enough blood flowing through the body to keep his other organs running, and to do that, he has to get a TAH (Total Artificial Heart). This means, he is going to have to go through a tricky surgery, and stay in the hospital after the surgery for 2-5 months.

Here are the pros and cons of the surgery:

The surgery is more tricky than just a plain old heart surgery, so the risk factor is higher.
Not be eligible for real heart after the surgery for 2-8 weeks.
If he comes home with the TAH, have someone 24/7 with him at all times that is trained with it if anything goes wrong. (That includes the nights that Mom works, when we go out to eat, ANYTHING)

He goes up to almost the top of the heart transplant list.
He will feel much better when he comes home (if he comes home)
Most people get a heart before they come home on the TAH, which means he could have the surgery, recover in 2 weeks, get a heart, then be home in a total of a month. (That is the best case scenario)

We have gotten this info in bits an pieces over the past few weeks, and it has been a crazy two weeks.

Now, I'm gonna take this time to brag about my family.

We have endured the last 5 years, the first 2 years we traveled and moved constantly, never staying in the same place or house for more than 3 months, traveling with hardly anything. I remember bringing a computer, a few other electronics, and me and my brother each had a 5 foot by 3 foot box to fit the toys and other little things I wanted to bring, and to play with for the next 3 months. Then we moved finally near Boston, where one of the best doctors for hearts that is in the USA. We lived there for 8 months, then was turned down by the hospital, saying there was too many people on the transplant list, it would take us years to get high enough on the list to get a heart, and dad simply would not live long enough to get a heart there. We then moved to Lebanon PA, where we still live today for around 2 years. When we first moved here, we were told that dad would have to stay in the hospital for a week, every 6 weeks, then about 4 hospital stays later, it changed to 2 weeks every 6 weeks. And 2 weeks ago, we were told that my dad would have to have a transplant to keep his body going long enough to get a transplant.

But you know what?  We beat it, we traveled for 2 years to get our dad where he needed to be to live, we then moved again a year later to get him, again, where he needed to be. And now, we will beat this. Even if it takes 5 months for him to get out, even if it takes even longer after that to get a heart, we will wait and fight, because our dad is worth fighting for.

When I see my friends, and their parents get in the pool with them, or goes outside to sword fight with them, or goes out to rock climb, me and my brother have never had that, we watch those people and think, "How lucky are they" For the first time in 2 years, our dad about a month ago went out and went to a water park, and got in the water, which I cant remember him doing in a very long time. Our Dad does more than what most people could if they were disabled, he plans our school year and cooks, he goes out to eat and plays games, but I cant wait to have a dad that I can go and DO something with.

So, do you want to know what I say when people say "Eh, well the odds are that blah blah blah"
When people say that, I think about my dad. 1 in 100 people have a heart problem. 1 in 100,000 of those people have to get a heart transplant. And 1 in 1,000,000 people have to get a TAH. If you have ever met me in real life, you will hear me talk about the "Johnson Luck". This, right here, is what I am talking about.

Alright, sorry if I made you cry or depressed, go and watch something funny and happy, but just remember, most families can go out and go to a amusement park, or go to the pool, dont take it for granted, do it and have a good time, because some of us don't have that luxury.

Wednesday, August 5, 2015


"Hey Rich, what did you do today?"
"I played some games, messed around with the dog, and made a game."
"Made a game?!?!?!"
You have no idea how many times I've had this conversation, and every single person is for some reason, surprised by this fact. I made a game today. I make games all the time, so does my brother, so does my friends, its pretty much a "thing" now with my friends and I. But for some reason, people outside of that circle always seem surprised, and astonished that I made a game. I got to thinking about this, "Do people just not make games?" So, I decided to make this post.

A Dummies Guide To Games

You play games all the time with your family, board games, card games, active games, but have you ever thought of making your own game?

First, if your going to make a board game, the first thing you need to do is get a board. Now, you have to start thinking about what size of a board do I want, what kind of board, well, since I'm not the brightest person, I'm going to show you only ONE way. FIGURE THE REST OUT YOURSELF.

Things you'll need:
A ruler (Preferably a nice, not bendy 12 inch ruler, I use a 18 inch stainless steal ruler with a no-slide back)
A Pencil (With a good eraser)
A Generals Eraser (optional, I use Generals because it leaves nothing behind)
And Finaly, some 34 hour block of time. (Make sure you have snacks, because this is gonna get crazy)

"Uh, uh, sir..."
"Yes Bob?"
"Dont we need, Paper?

Things you'll need(continued):
Paper (1-4 sheets)


Grab your ruler, line it up to the side of your paper, make a mark on the paper where every inch begins, do this to the other sides of your paper. Make sure you start from the same end as the first side. Example: If you start making your marks on the left side of the paper first, and you line your ruler up on the bottom, make sure to do the same thing to the right side, line the ruler up to the bottom, not the top. Now, line up your ruler to the marks, make lines from right to left of the paper, make sure to use the same marks on the paper. Example: Use the first inch mark on the left side of the paper with the first mark on the right side of the paper. Once you have them lined up, draw a line from one mark to the other. Do that with the rest of the marks.(You can make a 4 piece board, you can just repeat these steps 3 more times and tape the paper together)

Now you should have something that looks a lot like graph paper, except the cubes are an inch by an inch You will notice that some of the edges of the paper are not an inch by an inch cubes. You can either cut that off, or just make it look fancy, and pretend that was part of the plan.

Now, if you want to make a card game, or a card/boardgame, your gonna need cards.
Things you'll need:
And one sheet of paper. (depending on how many cards you want)

Same thing as the board, just diffrent size. When you line up your ruler to the long side of the paper, make marks on every 3 inches, and on the short side every 2 inches. Then make the lines again on the marks, Then cut out your cards.

Now that is the Board and Cards of the game (Just in case you cant read) now, if you need to have peices, continue on. You can also just use dice for peices.

Things You'll Need:
A Belief In God

Now, your going to make a 1" by 1" by 1" cube. Make 1" make a square on the peice of paper, now make 2 more on top of that square. Now, make a square on each side of the top square. Then make one more square on top of the other 3. The shape of the squares should be in a Cross, cut it out, fold it, and tape it.

Now that I've taught you how to do this, when you make a game, ALWAYS wright down the rules in a book, or on a piece of paper, so that you and your friends can reference them, so that there are not arguments or confusion. Your first game /board/cards will not be perfect, practice them, and you'll do great. My first board was sposted to be half an inch squares, I had some half an inch squares, but most of them were 1" by 1/4", or other really weird lookin squares, now I have (after 2 years of practice) a near perfect, four piece board. If you do it more often that I did, you'll get it pretty quick. Thanks for reading!