Mommy.

Hi.

How are you all doing?

I just want to take a minute to talk to you all about my Mommy.

I have really been blessed to have a Mom like her.

If more people had a heart like her, I KNOW that the world would be a MUCH better place. God love us all, and to few people reallize that. We all need to reallize that God created us, and we are each unique. We don't have to worry about what color our hair is, what color our eyes are. You know why? Because its what God wanted them to be. God knows BEST. GOD NEVER makes mistakes, and never will. He created us, and you know, he is the ONE AND ONLY creater. He created this earth. He said for it to be done, and it was done. He knows our every weekness, and wants us to know that he loves us ALL. Nothing we do could change his love for us.

God will always love us, and will take us to Heaven one day. He cares for us, and loves us.

Thank you God for providing me with such a BEAUTIFUL, and loving mother.

Much Love and respect Peter Johann

P..S. All men are equal in the eyes of god!

BACK.

Hello everyone!

Its me again.

I am BACK.

I had my teacher to come out, and he gave me a lecture, and talked to me, about studying, and while at the same time, I'm listening to my History, to CONCENTRATE.

I have to listen via CD.








What he is talking about, is he wants me to study, and while I'm listening to my history, and school work, not to let my mind attempt and rome, and to get on where it feels best at.

Pulse oximeters, ventilators, suction machines, HFOVs, ECMO machines, EEG machines, ECG machines, defibrillators, Tasers, etc.

IT IS VERY HARD, when you have NO interest in the stuff you are studying, but I HAVE TO DO IT.

ALTHOUGH, I would RATHER NOT.

hahahahahahahahaha.

But, I NEED TO.

Worked with my mobility teacher, and we went to the court house, to practice on the steps.

While there, we explored the building.

We went to the court room, and I could NOT stop touching all the equipment, so she was continuously having to say, "Peter?, don't touch that. Peter? we can't touch that. Peter? If you can't quit doing that, we'll have to go OUT. Peter? If you push that button again, we are GOING OUT."

Its how i am when I get around equipment.

Oh, my goodness, I can't even BEGIN to explain to you the circutry board in my head, and the way it gets all loopy, when there is a machine in my reach.

Its just my way.

I'm the technical kind of guy, that is obcessed with the newest technology.

So, PLEASE, make sure that you watch out when you come across a cool machine, and I am, nearby it.

If I SEE IT, I AM PREPELLED TO IT, and before you know, its time to push buttons, turn dials, pull levers, flip swiches, move wires, push the button with the red light, play around with that clear knob, take appart a few things, press a few more buttons, and, do everything else.

WATCH OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

I AM OBCESSED WITH HIGH TECH MACHINES.

If I see one, I am going to go RIGHT TO IT.

ALWAYS.

Unless you tase me.








ITS THE WAY MY BRAIN WAS CONFIGURED AT BIRTH.

I came out asking, "Can I touch the oscillator? Just one look at that pulse ox, Let me feel that vent. Let me touch the suction machine. Let me play around with that apnea monitor. Let me see that baby who is on the ECMO. Let me see the defibrillator. Can I play around with the FREQUENCY on the HFOV?

May I feel the blue tube on that baby?"

Much love and respect, Peter Johann

Good morning.

Hello, everyone!!!!!!!!

How are you?

I am doing great!

I slept last night, and only woke up a couple of time. I had a dream about a ventilator. A baby was on a ventilator, in an incubator, and was AT MY HOUSE. Yes, it was a strange dream, but this baby was at my house, and I think she was born at 22 weeks. She was on a conventional ventilator, and had an ET tube i. I remember sticking my hand in the incubator, and touching her legs. I remember they were VERY small, and were very skinny. She was a VERY premature baby. I remember her on a BUNCH of other machines. A few pulse oximeters, an ECMO machine, I think there was an HFOV by her bed that would be used if she needed it. She was on a few IV lines, and some other things. Well, it was VERY weird dream, but I have extremely weird reams ALL OF THE TIME. Today I am having my teacher come out, and then my mobility teacher is coming and we are going to the court house, to work on propper Kane technique up & down stairs. HMMMMMMMMMMMMMMMMMMMMMm, maybe I can talk someone into letting me see a taser eh? Or maybe I can even shoot a taser.

hahahahahahahahaha

I have to go, but I'll update you on how everything goes when I get back.

Much love and respect, Peter Johann

Hello.

Hi.

How is everyone?

I'm doing better.

I had a very good night last night.

The other night, I was up, and didn't get much sleep at ALL.

BUT, I am doing MUCH BETTER.

I am now following a blog.

YES.

Its so nice.

The URL is below.

U all should follow it too.

Its great!

http://thepreemiemile.blogspot.com/

Well, anyhow, I have had a nice day, and have not had very many sinus problems.

WELL, except for this infernal draining.

:(

Oh well, it could be MUCH worse.

ehehehehehehehehehe

I am now sitting in my room, and am thinking about a story I read today.

Its about the which craft trials.

How sad.

They accused LOTS of people about which craft.

If people thought you were a which, they would do horrible things to you, like put you in the river.

If you survived, you were a which.

If you were a which, you were killed.

Most likely hanged.

So, anyway you put it, you died USUALLY.

How sad.

Its horrible how people were treated.

I feel VERY sorry for all those men and women.

Well, I have to go eat.

P.S. I E-Maied Santa yesterday, and told him I want a cough assist machine, a pulse oximeter, and an apnea monitor.

hahaha.

Much love and respect Peter Johann

Good night.

Well, I am going to hit the sack.

hahaha.

I am doing MUCH better. I have used my humidifier, with the blue tubing, and that has REALLY helped me. I may one day have to stay on it 24/7.

I would hate for that, but it may have to happen. IF I HAVE TO HAVE A TRACH.

NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!

Well, if I do have to have a trach, I am sure I won't die.

Afterall, I coud have it A LOT worse.

I cd be nying in a crib with Sandhoff disease, and hooked up to TONS of equipment, and having to be suctioned every few minutes.

BUT I AM NOT.

I have it REALLY EASY.

So, if I ever DO have to have a trach, I know it will be for the best.
Well, good night.

Much love & respect Peter Johann

Sick.

Hello eveybody.

How are you?

I'm not doing too well.

I'm having trouble coughing stuff up.

As some of u know, the other night, Last Sunday to be Exact, I accidentally aspirated some on my pediasure. YEAH. I've been having problems everysence.

I'm not weezing, so my Mom does NOT think it is pneumonia. BUT IT FEELS AWFUL. I am having trouble breathing, and really can't get a good breath in.

I have also been having little incedents where I get chokes on my food but not NEARLY as halfway as bad as Sunday.

I am having trouble swallowing these days.

If things start going downhill I MAY have to use a tracheostomy.

NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO.

NOT A TRACH.

If I was told I had to have a trach, I would faint. The shock would possibly send me into a panick attack. YES. That is how much I fear a trach. Please. DO NOT DO A TRACH unless you have to. Of corse, it might help with my lungs. My lungs are not doo well right now.

I am really having a LOT of trouble breathing.

Well, I need to go and try to get some of this junk out of my lungs.

God bless.

Much love and respect Peter Johann

P.S. May God bless you and keep you in his outstreched hands, and may you NEVER forget that he loves you EVERY MUCH!!!!!!!!!!!!!!!!!!!!!!!!!

Momoftwinsplus1

Hello.

How areyou all doing today?

I am coughing, and still feeling bad. I wanted to let u know a little secret. Now don't tell her this, but I'm telling EVERYONE I can on YouTube to sub to Momoftwinsplus1.

If u are a YouTube member u can do it too. PLEASE DO. It would mean a WHOLE LOT OF THE UNIVERSE TO ME.

Thank you!

God bless.

Much Love and resect Peter Johann

Happy Thanksgiving everyone!!!!!!!!!!!!!

Hello.

How is everyone doing?

I'm doing very poor this morning. I aspirated my formula a few nights ago, and had to go get a chest X-Ray, and other tests the other day. I can't quit coughing, and its getting really hard.

I did it Sunday night when I was eating. I got chokes, and that night I was up ALL NIGHT coughing, and gasping. The other morning, I went to the hospital to get it checked out.

They did a chest x-Ray, & some other things.

It was a little spot there, but nothing THAT BAD.

I just felt AWFUL!

I'm sitting here coughing as I write.
\







Well, I would like to wish EVERYONE a happy thanksgiving. Today is the day when the Pilgrams found AMERICA.

We should be Thankful that we don't have to work as slaves. Let US be THANKFUL FOR WHAT WE DO HAVE instead of being sad for what we DO NOT have.

I am glad that at least i can see a little bit, that i have great parents who love me, and have always taken care of me, for great supplies that help me breathe, and help with my writing and all my school work, I am thankful for YouTube friends, and I am thankful for billions of other things.
There is a girl on YouTube who I want to tell u about because I suppose there are some people watching on YouTube that might be keeping track of this SOMEHOW.

This girl who's name is Lori.

She is a YouTube member and she has a husband and three little children.

Ella Derek, and EMMA.

Emma is a child that really means A LOT to me. She has a trach, and has cerebral Palsy. She can't swallow, so she has to use a special machine every nce and a while to help her get salava out of her mouth. She must breathe through a hole in her throat that is connected to a ventilator. This ventilator helps her breathe. She is so sweet. She is strong no matter WHAT happens. Se has touched my life. Well, Lori has been such a help to me when I have been sick lately. For almost half a year she has given me support, and has REALLY meant a lot to me.

I just want to take a minute to thank her.





Dear Lori. Today is the da we all need to give thanks to everyone for helping each other and to the Lord.

I want to thank you for all you have done for me. You have given me support, and have touched my life. I will NEVER forget you, and will NEVER quit thinking about u. You have been a blessing to me, and everyone else who knows you, and I think u deserve all the kindness u can get AND MORE.

I can't tell you how many times u have brought tears to my eyes by yourkindness and by your touching words. I wish the world had more people like YOU Than we would have a MUCH BETTER HOME. You bring light to the worls, and children with special needs really have been blessed by your kind works.

Thank you Lori Ella Derek, EMMA, hubby, and everyone else who helped Lori.

Thank u everyone in Lori's church for putting me on your prayer list. You have a GREAT GREAT GREAT GREAT REWARD IN EAVEN AWAITING YOU.

THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

xoxoxoxoxoxoxoxoxo

Hello.

Hi.

How is everyone?

I am doing GREAT!

Having health issues, but that is always going to be so.

ALWAYS.

I've started a Tay-Sachs support group, that helps with children and families of children who have Tay-Sachs or even SANDHOFF disease.

the support is on YouTube.

WE ARE RAISING AWARENESS OF Tay-Sachs and Sandhoff disease because we want to help find THE CURE for the disorder.

Its ALWAYS FATAL.

Both forms Tay-Sachs are ALWAYS FATAL.

Sandhoff disease is a severe case of Tay-Sachs which is ALWAYS fatal in itself.

So, if Tay-Sachs disease is ALWAYS fatal, than think of how bad Sandhoff disease is.

WOW!!!!!!!!!!!!!!!!!

I couldn't imagine having a child with Tay-Sachs.

Well, just to let u know, that if u have a YouTube account u can join my group.

If u DO NOT have a YouTube account and u know of a family of a child, are in a family with a child, or EVEN HAVE A CHILD with the disorder, than PLEASE GET A YouTube account.

We will give u all the support we can give u.

THANK YOU!!!!!!!!!!

Much love and respect Peter Johann

Broken glass, and broken lamp.

Hello.

Today I was going into my room to get my formula so I cd eat, when the cord to the lamp was in the way. I didn't see it, and by the time I caught it, it was too late.

I stepped on the BLACK cord, AND, pulled the lamp down. I didn't know it, until the glass was broken.

CRAAAAASH BANG.

Well, I thought, OH NO.

I DID NOT SEE THAT.

I started picking it up.

My sister comes in there, and starts yelling at me, saying that I did it and wasn't watching what I was doing.

Her son must have been playing with it, and left the cord out where it cd be stepped on.

I'm the one however who has to take the blame.

She is like, "PETER? WHAT DID YOU DO?" I told her in a calm voice, "It was an accident. The cord was out there and I didn't see it." "IT WAS BACK BEHIND THE BOOK SHELF." I am not stupid. I know where the cord is. She wasn't in the room when I did it, so how is she suppose to know? Well, she isn't. Well, that's my sister's way. She is mean, and really has no respect for me. Oh well, it cd be worse. But Mom told me not to worry about it.

Although, I'm VERY ticked off still. Well I have to go get a UA at the hospital, so I will talk to you later.

Much Love and respect Peter Johann

P.S. today when I get home I will tell you about the adventure I got to take into class to play the piano to the kids in the Kindergarden class.

More about that later.

Here is a list of pictures for you all.

Hello.

These are some pictures of pieces of medical equipment such as three pulse oximeters, a suction machine, and a ventilator.

I think that is all.

So how has everyone here been?

Just to let you all know, that you don't have to be a member to comment on my blog. Just click comments below my post, and you will be taken to the comment's section, and you will need to enter your E-Mail adress,, and your name, which by the way will be on the comment's section. Well your NAME WILL, but your E-Mail adress won't I don't think.

I hope you enjoy.

Please comment on my posts.

My blog is absolutely flat on viewers except one, which is my school teacher.

He likes to check up on my blog, and see when I update it.

He says that I aut to write about what I study in school more and not so much as the medical equipment.

hahahahahahahahaha.

He is a character.

I like working with him.

I tell ya, if you ever have him as your school teacher you are a VERY VERY VERY VERY lucky person.

He's really blessed me.

Well I'm gonna go but I'll update more on what's going on later.

God bless.

Live and respect Peter Johann

Cough Assist

Hello.

Here is a picture of the Respironix Cough Assist.

This machine is used in the removal of secretions for patients with neuromuscular disorders such as SMA, MD or there might even have been some cases in which it has been used for children with Tay-Sachs, but I don't know.

The patient puts a mask on his/her face, and the machine is swiched on.

The machine puts posotive pressure on the lungs, and then quickly shifts to negative pressure thus removing secretions out of the lungs.

The machine is used either in automatic or manual mode.

Manual mode means that the patient controls when the machine goes into positive negative pressure. AUTOMATIC means that the machine goes into automatic and manual mode based upon settings dialed into the machine.

Each breath from positive to negative pressure represents a cycle.

A series of cycles is needed to remove secretions.

This machine is not painful but does kind of feel a little bit weird.

The machine is used in patients with a mask, a mouthpiece, OR an endotracheal/tracheostomy tube adapter.

All three interfaces basically work the same way, the only difference is that they are placed on the patient differently.

Each interface is painless, and fits snug.

The Cough Assist or In/exuflator is becoming more avalable, and it's use is known by more people. A lot of patients say that the cough assist in/exuflator is painless and has avoided hospitalization.

The Cough assist machine is easy to use and portable.

It plugs into a wall outlet, and if necessary, it can be adapted to go into a car plug that hooks up to a cigarette lighter.

Those can be purchased at your local store, or electrical store.

The cough assist machine saves lives, and SHOULD BE USED BY ALL PATIENTS WITH SMA, MD, or any other Neuromuscular disorder that reduces the ability to cough.

Thank you!

Best wishes, and love and respect to ALL PEOPLE.

Peter Johann

Good morning.

Hi.

How areyou all doing?

I'm really not doing well AT ALL.

I'm stopped up, and have junk in my chest that I can't get out.

I feel absolutely HORRIBE.

I talked to my Doctor about a cough assist machine, he said NO.

He said It wouldn't help me.

So, I'll have to continue using my suction machine, and that can be REALLY painful.

Imagine sticking a tube into your windpipe to get that junk out.

THAT MUST REALLY HURT.

IT DOES.

Oh well.

Its better than having a tracheostomy I guess.

Although a tracheostomy might help me get my stuff up better.

Well, I have to go eat, because I have a chiropracter's appointment, when I'm sick like this, it usually takes me about one hour to eat.

I have to gasp for air, becuase my airways are pretty much closed when I get sick.

Well, have a good day.

Much ove and respect, Peter Johann

Hello.

Hi everyone.

How are you all doing?

I have been resting, and on the Internet talking to a friend who I met on YouTube.

He is just like me in that he has an interest ("OBCESSION"), in medical equipment.

He has to use some too.

He will be getting a new machine, and POSSIBLY A VENTILATOR.

MAN.

He is excited.

I wish I was getting a ventilator and a cough assist.

It might help me with my lungs.

I have been sick lately, so I cd use a cough assist machine to help me break up all that gunk, and cough it out.

Well, talk to you guys later.

Have a good day.

God bless.

Much love and respect, Peter Johann.

GOOD MORNING!!!!!!!!!!!!!!!!

Hello everybody!

How are you all doing?

I am doing great!

i am sitting in my room having fun.

I am thinking about flashing lights.

I have been thinking about the GDX machine lately.

GDX VCC.

If u don't know about it, its a test that is used to measure the fibers of your optic nerves.

You place your head up to the machine, and you are told to focus on a red flashing light.

The picture is taken, and you hear a hmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmimmmmmmmmmmmmmmmmmmmmmmmmmmmming noise.

And then you can sit up.

That's pretty cool.

They can't use it on me, because my eyes are too small.

THEY TRIED IT.

It is hard, but I can't take it.

The thing that is hard is the fact that i like it SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO much, because of the lights.

But I'll never be able to take it unless my eyes continue to grow.

They found out that my pupils are growing with ME.

So that's good!

Much love and respect Peter Johann

At school.

Hello everyone!
I am in school, and am having tons of fun. I am on a computer break and I'm typing in my blog. Last night I had a dream about the Pulmonetics LTV 950 ventilator. It was pretty cool. I like that one. When the patient breathes in & out, these little green things go up & down. I like the noise of the alarm. Its in F Major. I have perfect pitch, and I can tell you what key a noise is in. Weather its a piano piece, or weather its the alarm of an ECMO machine. lol I am thinking about apnea monitors right now, and thinking about how the beep beep beep beep echoes in this house. You see, beeps from machines really echo in this house because the place is wide, and its the sound that bounces off everything. Its reeeeally cool. I like echoey sounds. Especially beeeeeeeeeeps. They are very very cool. I like the beep of the Ohmeda 3500 in the house. It has a very bouncy echo. beep beep beep--beep beep

The Ohmeda 3500 is the one with black numbers on a yellow lit up background. Its just the sound that really interests me. beep beep beep--beep beep I like the noises of machines. That's one reason i like all the equipment that i know of, such as HFOV, IPV, Cough Assist machines, suction machines nebulizers EEG machines ECG machines etc etc et. Those things are so coooooooooooooooooooooooooooooooooooooooooooool!!!!!! I mean the beeps buzzes hums, whirls, and the clicks and the other things are just so interesting. Sence I can't see, I rely on hearing. So, I like the noises of the machines. Most of what i have heard in my life is beeps and other noises. I have to use LOTS of equipment. If I didn't have that stuff I would be VERY VERY sick. Mom and Dad told me that if it were not for all that stuff that they can use to help breathe for people and all that other stuff than when i was born, I probably would NOT have survived very long. THANK GOD FOR THAT COOL AND MUCH NEEDED STUFF. It Helps save lives, and that is what counts most. Not the noises but the FACT THAT IT HELPS SAVE PEOPLE'S LIVES. The noises and all that is cooooool, but the way it helps you breathe, eat, and all that other VERY VERY VERY IMPORTANT STUFF THAT REALLY NEEDS TO BE REMEMBERED. Not only that, but in the old days, they did NOT have that stuff, so children who were born with breathing problems and stuff like that usually died sadly. THANK YOU FOR THE HELP YOU HAVE GIVEN US SO THAT MORE PEOPLE CAN NOW LIVE, and be very very very very happy. I mean, words cannot explain how much this equipment can do for us. THANKS

I will be talking back later to you when I get home, but for now, GOOD BYE.

Much love and respect Peter Johann.

P.S. I will be posting more videos on YouTube tomorrow probably.

THAT WIL BE AWWWWWWWWWWWWWWWWWWWWWWWSOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Pictures.

Hi.

I thought I might share some of the pictures I like to look at with you.

I slept well last night, and only woke up once.

I have been sleeping better the last couple nights.

Well, here are some of the pics I look at.

Three pictures.

The machine with white numbers on a blue background is a pulse oximeters.

The other two machines are oscillating ventilators.

(High Frequency Oscillatory Ventilators).

Much love and respect Peter Johann

Practicing on pictures.

All right.





I'll bbe posting some pictures to practice on the image thinggy.





This is fun.












Here is a very cute baby.

I think she is doing better.

She has a trach, and is at home.

Here is the Ohmeda 3760 pulse ox on the left, and the patient on a ventilator on the right.

YAYYYYY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I DID IT!

HURAY for Images of people on ventilators!!!!!!!

FINALLY.

I now have an image of someone on a mechanical ventilator.

YAY!!!!!!!!!!!!1

I will be practicing.

Hello.

Hi.

How have you all been doing?

Im doing just fine, but I am gonna try my picture again, and see if it posts below.

Here goes.



DSC05042.JPG

Another test

Hi.

How are you all doing

I am sitting here typing.

I am gonna go study with my Dad later, about the Great Contreversy.

Testing

More testing to see if I can figure out how to get a picture up.

NOT GOING TO WELL AT ALL.

Still experimenting!

I'm still experimenting with pictures, so I am trying to get pictures below my writing.

Here we go.

If this does not work, and you see a blank spot, that's because the picture did NOT work.

Fun test.

All right.

I am trying to experiment around with the blog, and trying to get pictures of equipment and other things on there.

Let's see if we can do that.

This is a TEST.

Some of my favorite videos.

Here are NINE of my favorite videos.

There are thousands, but it would take me ALL DAY, to put them up here

lol

Here we are.

http://www.youtube.com/watch?v=wBofmi6r8Dchttp://www.youtube.com/watch?v=EcDyxmaOHoAhttp://www.youtube.com/watch?v=vbExZ6FvVEwhttp://www.youtube.com/watch?v=kP6bVg5wZlEhttp://www.youtube.com/watch?v=Blmxxe4_QcMhttp://www.youtube.com/watch?v=NWKu2JWubOchttp://www.youtube.com/watch?v=FnmTOGPfqSEhttp://www.youtube.com/watch?v=FFdrzRMjEOohttp://www.youtube.com/watch?v=mpDwAviv56g

Cough Assist

Hi everyone!

Here is a picture of what the cough assist machine looks like.

Hopefully the machine will be on here.

I'm still VERY NEW, to posting pictures on a blog.

Just tried it.

IT DID NOT WORK.
































LOL.

I'll have to ask someone and try to learn it.

Once i do that, I can send you TOOOONS of pictures.

Video of the Datex Ohmeda TruSat 3500 pulse oximeter

I thought I might share a video with you, that a kind Mother of a VERY CUTE LITTLE BOY DID FOR ME.

Here you are.

http://www.youtube.com/watch?v=hdB0PnQ2Szs

Hello.

Hi.

Good morning!

How are you doing?

I am not doing so well.

I am sick, and am VERY stopped up.

I am doing better than I was the other days, but I didn't sleep well last night, BECAUSE of my stopped up nose.

I had a dream about a pulse oximeter too.

The Nelcor N-200.

Its an AWWWWWWWWWWWWWWWWWWSOME pulse oximeter.

I have never seen in in real life, but I have seen it in pictures.

I would LOOOOOOOOOOOOOOOOOOOOVE to have one, but I DOUBT my parents will EVER let me have one.

My parents always ask me questions whenever I want medical equipment.

Like:

What are you going to do with it?

Why do you need this pulse oximeter?

When you get it, where are you going to put it?

ALL THAT JUNK.

I tell ya.

I'm desprate for a pulse oximeter of my own.

I would kill for one.

hahahahahahahahaha.

Well, I have to go.

God bless.

Much Love to everyone Peter Johann

Good night.

Well, I am fixing to go to bed, but I want to leave you all by saying, that tonight is my day of worship starting from sunset tonight, and ending at sunset tomorrow.

WELL MY DAY OF WORSHIP, N.E.V.E.R ends.

I always worship God, and will NEVER forget to worship him.

Its nice to worship with God.

He loves us, created us, and wants us to honor and serve HIM.

Well, Good night, and God bless.

Good night, sleep tight don't let the antiblog bugs bite. If they do, get your shoe, and beat them black & blue.

Tell them that You are gonna keep blogging.

WHAAAAAAAAAAAAAAAAAAAACK!!!!!!!

Much love & respect Peter Johann.

Hello.

Hi everyone.

I am now sitting here, stairing out at the sky.

Its a nice day, and its 69 degrees now, so its warm.

I am having LOTS of fun.

I haven't gotten any viewers yet, that I know of, but I HOPE I GET SOME.

Well, talk to you later.

Much love and respect to ALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!11

Back.

hi.

How are you?

I am now in my room, and I am not so stopped up.

I am kinda agravated because one of my YouTube friends named piano6861 who is VERY KIND by the way, hasn't been responding to what I have sent her, AND I KNOW SHE HAS LOGGED IN, because her channel has inside, "last log in, 15 hours ago."

Its getting rather annoying, because for the last week, SHE HAS NOT BEEN VERY RESPONDANT.

She keeps saying that she's going to do the Tutorial of a Minuet in C Minor by J.S. Bach, but then when I asked her last week, she ignored me, and really hurt me.

Well, I'm getting to think that she's getting tired of me.

She's been very nice and sent me C.D.s but I feel that she's getting so agravated that she feels like she needs to block me.

I DO NOT WANT HER TO BLOCK ME.

I try to be my best, and very kind to people, but LOTS AND LOTS AND LOTS of people block me.

So I DO NOT KNOW.

I'm kinda mad right now.

I am just sitting here, and thinking about piano6861.

How she use to be so nice and answer all my responses calmly, and now all of the sudden, she's ignoring me.

I AM VERY WORRIED, and don't want her to block me.

Well, talk to you later.

Much love and respect to ALL, including piano6861 even though she's ignoring me.

Probably for a reason.

At school.

Hi everyone.

I am here with my teacher, at her place, and I am taking a practice ACT. Its hard, but I finished the english part of it. Next will be the reading. I had a good dream about a cough assist machine. It was that I had one, and that I tried it out. I was able to cough stuff up better, and I got some snot out of my nose. Man. I tell you. From what i have heard, the cough assist machine is awwwwwwsome!!!!!!!!!!!!!!!!!!!! I'm gonna save my money up for an IPV machine. lol. Those machines are cool. I love the noise. lol. the thud thud of the machine as it puffs liquid into the patient's lungs. You know, IPV stands for Intra pulmonary Percussive Ventilation. Its a machine, that is used for people who need a little extra or a LOT of extra help getting secretions out of their lungs. For SMA Patients its used, to help get secretions out to where, they are able to be coughed up with the cough assist machine. Or, if the patient can, they can manually cough them up. The cough assist machine simulates a cough by putting positive pressure on the airways, and then shifting to negative pressure on the airways which is the same thing a cough does. ONLY the cough assist is used when a cough is not suffecient enough to do that. The cough asist might be used for someone who had a disorder called SMA, inwhich the muscles atrophy. SMA stands for 9Spinal Muscular Atrophy), and there are I think Three types. Type one is usually Always fatal. The cough assist is a painless machine, but it does kinda feel weird from what i have heard. A mask is put on the face, or a mouth piece is used. For children who have a trach, or an ET tube, an endotracheal/tracheostomy tube adapter is hooked up to the tube. The machine should already be turned and the pressures should be made sure that they are in the correct ammount. The machine then goes onto the right interface, and the machine puts posotive air into the lungs. Kinda like a BIPAP, or a CPAP machine. then the machine puts NEGATIVE pressure and sucks all the air out thus simulating a cough. Now, I've heard that when the cough assist is used, it kinda feels like the machine is sucking the air out when it swiches to the negative pressure phaise. Each cycle is equaled to one cough. A series of 4 to 6 cycles is used to help bring out all the junk, and if necessary, the patient is suctioned. IPV is used first if an IPV machine is uused. Then the cough assist machine. What the IPV machine brings up out of the lungs, the Cough assist or the in/exhuflater brings out along with the suction machine.

I have been studying this for several years, so this is how i know this. hahaha. It just takes A LOT of practice, and listening, writing, playing around with, and other things that I have donee sence I was about four. Its tons of fun for me. I love it when I see a new machine. Well, anyhow, i'll be writing more to you when I get back, and we'll talk about ECMO.

Have a good day.

much love and respect Peter Johann

p.S. ECMO will be a big long one, but we'll get through it.

Working with home teacher Mr. Pierce.

Hello everyone!

I am working with my good and Very funny teacher, who really knows how to speak to the heart. He knows what to say, to make you do your homeowrk, and you can bet that when you don't do that, he knows Exactly what he can do.

Peter Johann?

You need to do your homeowrk.

It was suppose to be done a few weeks ago.

But, I didn't know how to do it.

And all that.

Well, I am going to go, but i will talk to you all later.

I will talk more tomorrow.

I will have Pleunty of posting to do then, to tell you how I slept there.

Well have a good day, and a good night.

Much love and respect Peter Johann.



P.S. Tonight Mom and i will listen to some nice classical music on the Bowse radio.

Good bye.

Beautiful morning.

Hello.

How are you all doing?

Did you all have a good night?

I did.

THAT IS FOR SURE!!!!!!!!!!!!!

I usually spend the night snorting, gasping, sniffing, blowing every 5-10 seconds, and other VERY UNPLEASANT things.

Today I am just sitting here ading more to my blog.

Like I said in the previous blog entries, I will be gone most of the day, BUT, I will be back tomorrow for SEVERAL more posts.

I went to bed about 10:00, and slept until about 6:25.

Then I woke up, and sat for a little while, until my sister got up.

I then got up, and came in here.

I had 27 E-Mails this morning.

They were from YouTube.

Messages videos, comments, subscriptions, and other things from my 1,340 friends.

YES.

One day I woke up and i had like 109.

lol

I had a dream about a pulse oximeter.

My dreams usually consist of medical equipment like pulse oximeters, apnea monitors, ECMO machines, HFOV machines, HFJV machines, EEG Machines, EKG machines, defibrillators, anesthesia machines, suction machines, nebulizers, aerosol compressers, etc.

I have wierd dreams.

One night i had a dream that I found a defibrillator in a Hotel that Mom and I were staying at.

:P

It was funny.



I really enjoy machines and gadgets like that.

I also some times have dreams that i am stealing people's classical C.D.s.

You see, I love classical music SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO much, that I am practically adicted to the stuff.

I want more and more and more and more and more and more and more and more and more.

Its just me.

I mean, its so quiet, and sad, and It can even be SILLY AND VERY HAPPY.

Well, I'll be talking to you later before I go to the Library.

I have to go tell these little children a story.

You see, I am showing off my tallants to everyone in the world.

hahaha.

Well have a good day, and i will get back to you about an hour or so from now.

Much love and respect Peter Johann

Getting ready for bed.

Well, everyone, I have to get ready for bed, but Tomorrow morning, I will be doing a few posts.

I usually don't sleep at night, because my sinuses keep me up all night.

I have to sit up at night, (Sleep in a recliner, BECAUSE, If I sleep lying down, stuff drains into my sinuses, and I wake up the next morning, saying, "OH NOOOOOOOO.

I'm stopped up.

I NEED SOME OXYGEN.

AND I NEED SOMEONE TO DO MOUTH TO MOUTH ON ME."

hahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahaha.

Seriously.

I FEEL HOOOOOORRIBLE.

I have to suction my nose out A LOT more.

So, I have to sleep upright.

OR ELSE.

Well good night.

I will be doing PLEUNTY OF WRITING BEFORE 10:00, but after that, I WILL BE BOOKED FROM THEN UNTIL ABOUT 2:30 FRIDAY afternoon.

I am so happy I have a blog.

Well, GOOD NIGHT.

May God's angels watch over you, and may the sand man, put LOTS of sand in your eyes just not too much.

Good night.

Sleep tight.

Don't let the ANTIBLOG BUGS BITE.

If they do, than get your shoe, and beat them black and blue.

TELL THEM THIS.

"I am gonna write all the blogs I want to, and If YOU don't like it, well, THAT IS TOUGH LUCK.

GOOD BYE BUGS."

WHAAAAAAAAAAAAAAAAACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Much Love and respect Peter Johann

Hi guys.

Hello.

How is it going?

I can't stop blogging.

I'm visually impaired, and sence I have to have a bit more help doing things, EVERYTHING NEW I DO, IS SUCH JOY.

So, I like to show it off, & so I am showing my blogging skills off.

LOL.

I am having fun doing this.

I am sitting here thinking about classical music.

I am listening to a story who learns a lesson of kindness.

I am also thinking about ECMO.

I wonder what the ECMO machine sounds like.

You see, sence I can't see very well at all, I must use sound, feeling, and other things, to help me.

So sounds THRILL ME.

Most people wanna throw pulse oximeters and other machines out the window, because the alarms MAKE THEM WANT TO SCREEEEEEEEEAM.

I on the other hand, LOVE the noise.

lol.

Well, I don't like the fact that a child or someone is desatting, or something like that, BUT,, I like the sound, because it signals that there is a machine nearby that I like.

SO I AM ON IT.

I'm there touching the machine, pushing buttons, etc.

Its my hobby.

Studying medical equipment.

I have had to spend my life around it, SO, I AM BOUND TO BE INTERESTED IN IT.



Much love and respect to ALL PETER JOHANN

Sorry for all the miss spelling.

Hello everybody!

How are you?

I just want to appologize for all the misspelling.

For some reason my computer appears to be really slow on my blog, so there are LOTS of misspellings because the computer left them out.

HMMMMMMMMMMMMMMm.

I don't know what's with it.

I usually can spell pretty well.

But anyhow.

God bless.

Much Love Peter Johann

Desat

Hi.

Have you ever seen a patient on a monitor desatting with IPV?

There is this video on YouTube, where this little baby is desaturating with

his IPV Treatment.

Could someone try to explain that to me?

I am just a little bit curious about that.

His mom told me that his lungs get relaxed with IPV, and that he tends to get REALLY apneic, but all IPV does, is try to loosen up secretions.

Intrapulmonary Percussive Ventilation.

Hello.

Hi.

How are all of you doing?

I am doing very well.

I am kinda stopped up, but that is usually how I ALWAYS AM.

You see, even though I can breathe through the left side, the opening is no bigger, than a pinhole.

So, when I can breathe its with laber.

I am mainly a mouth breather, because of my nose, but when my nose gets clogged up, I am SICK SICK SICK.

It is NO FUN.

Its absolutely NO FUN.

I am doing pretty well though.

I am sitting in my room, and thinking about medical equipment.

lol.

That's usually waht I think about in my free time.

Tomorrow I will be in school from 10:00 to about 8:30.

I have a teacher that comes out here, because I can't go to a regular school, because the Germs would kill me.

But after he leaves, I go to Somerset.

I work at a lady's house and she teaches me Chemistry, braille, and Arts and humanity.
I just finished spanish, and am now going to arts and HUMANITY.

The school teacher that comes out here from 10:00 to 12:00 teaches me history, Literature, English, and all that.

I then go to Somerset and work from 2:30 to 8:30.

Then I stay at an apartment and go back to school from about 8:30 to 12:30.

I then come home.

IT IS A HARD EXPERIENCE, but I do fine.

Although, the apartment is VERY DRY, so I tend to have to get my suction machine there and REALLY GET THICK SECRETIONS OUT.

I will be back, and do more blogging.

Well, God bless.

Much Love and respect.

Peter Johann

Mozart

Anyone like Mozart?

W.A. Mozart?????????

Nice music eh?

He's a pretty good composer.

I like him.

He's one of my favorites.

I think my favorite piece from HIM, is the Minuet in C Major.

I aBSOLUTELY LOVE HIS FATHER'S MINUET IN C MAJOR.

Well, have a goo day.

God bless.

Lots of Love from Peter Johann

Story

All right.

I like to doodle around with stories and cool things.

So I am going to write a little story about stuff I like to write about.

Here is a medium sized story of something that I am going to make up.

All right.

I am going to check your oxygen sir.

All right.

When can I leave?

Whenever your chest X-Ray comes back.

All right.

If IT IS GOOD.

If everything looks all right, and you don't have any spots on there, than you can leave.

All right.

HMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM.

Your oxygen saturations are only 86%.

I'm going to put you on some oxygen.

WHAT????????????????????????????????????????????

I am not breathing well?

Well, your breathing fine, BUT you just need a little bit of extra oxygen.

All right.

i am going to put these things in your nose.

WELL, I don't call that my nose.

OOPSY.

Sorry.

I stuck it on your eye.

Sorry about that.

All right.

Please be careful though.

All right.

THIS IS A SON OF A GUN UNCOMFORTABLE.

WOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Please get this out.

I'm sorry, but we can't.

WHY?

Because your oxygen is low, and we need to get it back up.

AHHHH.

Get these out.

I don't want to make you lose anymore oxygen so I am going to keep your oxygen on.

All right.

AT LEAST UNTIL your oxygen comes up.

All right.

I guess that's all right.

A few minutes later.

I need to turn your oxygen up to 2 LPM.

Your sats are only 82%.

PLEASE TURN THE BEEPING OFF>
PLEEEEEEEEEEEEASE.

That is just the pulse ox.

A WHAT?

The thing on your finger.

It measures your oxygen levels in your blood.
All right.

I see.

It is VERY UNCOMFORTABLE WITH THESE THINGS IN MY NOSE.

I am sorry.

A few minutes later.

Swich him to a Non-rebreather mask.

All right.

He's in the 70s.

ALL RIGHT.

A few minutes later.

Your Chest X-Ray is good, but your sats are very low, so I am going to have to keep you in overnight to do some tests.

All right.

What kind of tests.

I will be doing an ABG.

Arterial Blood gas.

That is where I will stick a big needle in your artery, and take some arterial blood out.

I will then test it, and see if your gases in the blood are VERY HIGH, or messed up.

All right.

About 6:00 that night.

All right.

PLEASE TAKE THIS I.V. out.

Its getting on my last nerve.

I'm sorry, but we can't do that.

WHY NOOOOOOOT?

Because you need to be given fluids.

All right.

I am going to do the blood gas test now.

All right.

Several seconds later.

All right.

You are going to feel a big stick.
All right.

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH.

Sorry.

WHAT WAS THAT FOR?

I just had to get some blood out.

A few minutes later.

The blood gasses are normal.

The co2 is a little bit out of whack, but I am going to just keep him on the oxygen, and tomorrow if he is all right, than I will do another ABG, and a CBC.

And if those are good, than he can go home.

All right.

7:30 that night.

All right.

Something is creepy here.

His sats are now 78%, and he's on 100% oxygen.

I'm affraid there is only ONE MORE THING WE CAN DO.

What?????????

Sir?

We're going to have to put you on a ventilator.

WHAT?????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????

I AM NOT GONNA LET YOU PUT A TUBE DOWN MY THROAT.

I'm sorry, but I need to get your sats up, or you could die.

All right.

A few minutes later.

So, I will numb your throat, and then I will be inserting the endotracheal tube down.

All right.

Your sats are getting lower by the Minute.

All right.

I'm going to give you something to relax you.

All right.

I will put it in your IV NOW.

All right.

A few seconds later.

Bag him.

His sats are dropping.

30 seconds later.

All right.

I am going to insert the tube.

All right.

10 seconds later.

I can't see.

GIVE ME SOME SUCTION.

All right.

20 seconds later.

YIKES.

Saturations?

80 and dropping.

BAG HIM.

ALL RIGHT.

One minute later.

I'm inserting the tube.

All right.

I'm in.

BAG HIM.

I'll pressurize the vent.

All right.

His blood oxygen saturations are coming up.

THAT IS GREAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

A few minutes later.

YES!

I am so happy.

The sats are now 100%.

All right.

Let's get him to the ICU.

All right.

That's just a bit of a story a series of hundreds that I like to fiddle around with.

Well, have a good day.

God bless.

LOTS OF LOVE FROM PETER.

Pulse oximeter

beep beep beep--beep beep

What's that noise?

Its a pulse oximeter.

The Masimo.

Its a Masimo Radical 7.

It is on a patient in a patient room.

The patient's heart rate is a little too high.

The monitor is going off.

A Pulse oximeter, is one of my favorite pieces.

Its a device that clips or tapes onto a patient's finger, and has a little red light in the finger sensor.

It measures the oxygen levels, and the heart rate.

If a pulse oximeter goes off, that means either the sensor has come off, the Spo2 (Oxygen is too Low, or High), the Heart rate is too low or high, or its not getting a good reading.

The normal oxygen levels are between 90 and 100.

Well, for children who have breathing problems like Me, a good saturation level would be from about 95%, to 100.

So, if you ever have to have one of those used on you, remember that it doesn't hurt, it just measures your Oxygen saturations in the BLOOD, and your heart beat.

Some even beep to your pulse.

Well, that's a short Medicine lesson for today.

I'll have several lessons each day, and ONE BIIIIIIIIIIIIIIG LESSON EACH DAY.

Love and Happiness to EVERYON!!!!!!!!!!!!!!!!!!!!

Classical music

Here is a bit of what I think about classical music.

I love classical music with all my heart, soul, and MIND.

Classical music is so beautiful.

One of my favorite pieces in the Minuet in E Flat by CPE Bach.

Another one is the Brahms Lullaby.

Man.

That's almost like a Minuet.

It sounds like a Minuet, but alost like a Waltz too.

Classical music is an old noble art.

If you listen to it, than it will make you smart.

I have about 130 classical C.D.s, and still need more.

Classical music beats RAP, and Hip Hop by 8676895769485674968759675986789678947689576.

I don't like Rap and Hip Hop, because they don't have any feeling to them, except sadness, and to me a very depressing feeling.

I mean, a lot of it is stuff like, this.

My Girl left me today, and I am so blue. I need some money, oh what can I do.

I got a speeding ticket cause i was going 60 Miles an hour.

I couldn't talk him out of it, because i didn't have that power.

So now I have to go to court, and pay a major fine.

I didn't see the speed limit.

I didn't see the Sign.

I'm sorry officer for speeding down the road.

My car is getting dirty and the weather is getting cold.

Please don't give me a speeding ticket, because I won't do it again.

I know it was wrong, and I need forgivness for my sin.

All that.

I didn't do a very good job of that, but who cares?

I hate Rap and HOP HOP.

I'll take classical music anytime.

CLASSICAL MUSIC ROCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I mean, I love it.

Classical music is soft and slow, and it can be happy and loud.

I will do ANYTHING for classical music, and will do NOTHING for Hip Hop or rap.

So, keep that junk to yourself.

I'll keep my beautiful music to myself.

NO.

I'll share it with anyone who wants to listen to it.

1992peter

username on YouTube.

Check it out.

1992peter

Thanks!

Lots of Love.

PETER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hi.

How are you doing?

I am just doing another post.

I thought you might like some more posts.

As I wrote in my previous posts, I have a YouTube account.

Whenever I get a chance, I will post the URL on my YouTube channel, so people who view my YouTube channel can go to my website, and see my blog.

I thought you might like it if I shared some of the information about HFOV I have been looking up.

Basically I am going to tell you all about HFOV.

If your baby has ever been in the NICU, than you might have heard the term oscillator.

HFOV is short for (High Frequency Oscillatory Ventilation(R).

HFOV is used in the NICU or ICU, for patients who's lungs can't take the strane of a conventional ventilator.

All right.

Let's say our baby is in the NICU.

He is on the conventional ventilator.

But his lungs are so stiff, and uncompliant, that the ventilator alarm keeps going off. Well, what is the first thing they might do?

One thing they might do if they have NOT already done it is to try Surfactant.

Its a substance that kinda is like soup. Well, it keeps the lungs moist, I think.

If a baby doesn't have it, than they can't breathe very well.

Some premature babies need it, because their lungs are not fully developed enough, to start producing surfactant.

Well, let's contiue.

If the surfactant does NOT work, than they might try increasing the baby's vent settings.
UH OH.

The Doctor says as he is listening to your baby's lungs.

This is not good.

Someone get a pleuravac, so we can get a chest tube in.

He has a pneumothorax.

A WHAT????????????????????????????????

Pneumothorax.

nu-mo-thor-ax

Your baby's sats are still plummettting, into the lower 80s, and the mid to upper 70s.

So, they put a chest tube in.

A Pneumothorax is a hole in the plural space of the chest wall.

Air leaks into the space and ends up causing a collapsed lung.

A chest tube is inserted to drain the air out, while the lung is healing.

But even that doesn't work.

So, the Doctor comes in, and says, "Sit down please.

What's the matter?

Doctor?
This ventilator will have to go.

I'm going to have to place him on a machine called the oscillator.

What?

This device is a ventilator, that pushes little tiny puffs of air and oxygen into the baby's lungs at a rate of 700 to up to 12,00 BPM.

This device is used for baby's lungs, who can't withstand the stress of a conventional ventilator blowing BIG puffs of air at a slow rate.

This machine is brought in.

The Doctor explains that it will be A LOT easier because not only will it allow for your baby's lungs to heal, it will puff gentle puffs of air into the lungs, at a VERY HIGH RATE, thus ventilating the baby at the same time, not putting the stress on a baby's lungs, and letting them HEAL.

"

The ventilator is hooked up to your baby.

It is a scarey looking machine.

Its set to 800BPM.

Your baby's body is shaking to the machine.

The baby is vibrating kind of like.

Why is my baby vibrating to this machine?

Its because the lungs are being ventilated at several hundred Breaths Per Minute, and the chest is shaking because of the air that is being put into them.

The oscillator itself isn't making the baby shake.

Its the air that comes out of the oscillator that is going into the lungs, and making them go up and down very very very very very very very very very QUICKLY.

So, a few days go bye, and your taby is FINALLY taken off the oscillator.

NO.

The ECMO machine isn't needed.

We'll talk about that machine later.

But the baby gets off the oscillating ventilator, and gets to be put back on his old friend.

THE CONVENTIONAL VENT.

Oh no.

The lungs are starting to get stiff again.

Don't worry.

We'll just turn the vent down to where its not so hard on the lungs.

But what if that doesn't help?

We will have to put him back on the oscillator again.

All right.

Well, now that I understand a little bit more about the oscillaing ventilator, its not so scarey to see him on it.

BUT I STILL WANT TO SEE HIM COME HOME WITH ME.

AWWWWWWWWWWWWWWWWWWWWWW.

Don't you worr.

YOUR BABY WILL GO HOME WITH YOU.

A few weeks later, he goes home with you.

So, now you know more about the HFOV.

So, when your Doctor talks about the oscillator, you will be a bit more informed.

OTHER NAMES FOR THE OSCILLATOR.

HFOV, oscillating vent, oscillatory vent oscillating ventilator oscillatory ventilator oscillating breathing machine, high frequency vent high frequency oscillator high frequency oscillatory vent High frequency oscillating machine.

Tomorrow's topic.

ECMO

Hello.

I am back.

I am just sitting here, thinking about medical equipment.

You know, I keep thinking about Tay-Sachs disease.

I mean, there was an article I read in January, that really broke my heart.

Its about this little boy named Evan who was born with Tay-Sachs disease, and they didn't know it until he was about six months of age.

They had genetic testing, to see if the parents were carriers of the Tay-Sachs Gene, but they were told they were NOT.

A Mistake is telling someone they have the flu when they have a minor cold.

A mistake can't even begin to describe the destruction they caused Evan's family.

The article name, "They said the baby was fine. He wasn't."

If you would like, feel free to check it out, but I highly recomment you don't, because Its so sad.

Every sence I read it, there is this coding of sadness that I have felt.

The winter seemed to make it worse.

When the spring began, it seemed to die down, but i still feel for Evan's family.

I mean, picture this.

You had a baby boy.

He appeared normal, until about six months.

You noticed that he started falling behind.

He wouldn't sit up, he wouldn't even roll over.

You saw cherry red spots on his eyes.

You take him to the Dr.

Doctor?

What is wrong with my baby?

He does testing, and finds out that your baby has Tay-Sachs disease.

You are devistated with the news.

Well, you say to yourself, I was told we were not carriers of the Tay-Sachs ghene.

Well, you call the Dr. That tested you all, and he calls back, and said, "Oops. You and your husband are carriers."

That is worse than a Mistake.

THAT IS WHAT NO FAMILY NO MATTER HOW MEAN THEY ARE TO YOU, OR ANYONE SHOULD HAVE TO GO THROUGH.

I mean, that would be absolutely DEVISTATING.

I hate it when I hear that a child has Tay-Sachs or Sandhoff disease which is similar to Tay-Sachs only HEXB is missing.

In Tay-Sachs HEXA is missing.


Sandhoff disease is ALWAYS fatal too.

Now there are three forms of Tay-Sachs.

Classical infantile, which is what we are talking about, Juvenile Onset which is where some of the enzyme HEXA is present, but not enough, and it is usually fatal between the ages of 10-15 years of age, and LATE ONSET TAY-SACHS DISEASE.

Most of the enzyme is present, but not all of it.

This usually appears in the late teens, early adulthook, and usually is NOT fatal.

Well, God bless, and i will talk to you again.

Have a beautiful day.

Lots of Lovefrom Peter Johann

Hi everyone.

I am just sitting in my room, and am so excited that I will b doing hourly posts, to tell you what has been happening.

I just want to say, That I will be doing TONS, AND TONS OF BLOGGING Over the next few weeks.

At the MOST seven to NINE times a day.

LOL.

Its just fun.

Now I am gonna give you some info of the medical equipment I like, as you read in my first or maybe second post.

But I ESPECIALLY love pulse oximeters.

One of my favorites is the Ohmeda 3760P.

Its a pulse oximeter with black numbers on a green lit background.

It has a blue on button, and has alarm limits, and an alarm silence button.
If you know anyone or have someone who uses it, please E-Mail me.

I also like the Ohmeda TruSat 3500.

Its a pulse oximeter with ONLY THREE BUTTONS, and it has all the features of a regular bedside monitor in less than HALF the size of a bedside monitor.

GE Datex Ohmeda TruSat 3500.

It hase audio pulse beat, alarm limits, and even has an external printer.

Well, I need to go and eat, but I will get back later.

I eat a special kind of formula, because I can't eat real food.

I eat something called Pediasure.

Its a liquid that I drink.

Because of the way my mouth was formed, I can't chew like most people.

You know, I can't taste or SMELL AT ALL.

So eating just means, uh oh.

Peter? What? You need to eat.

AHHHHHHHHHHHHHHHH MOM?

I am in the middle of looking up HFOV.

I am studying an oscillatory ventilator.

Can I wait until tomorrow?

No.

So, eating is just something I do, and get it over with.

People ask me if I miss not being able to taste, and i say, "I never could, so I don't mind."

People say I am lucky that I can't smell.

lol.

I guess maybe I am.

hahahahahahahahaha.

I can't swallow very well, so sometimes I get choked on my formula and end up desatting.
I have desatted down to 60 before.

I LOVE medical equipment.

Well, gotta go, and eat.

BOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO.

lol.

God bless you Lots of Love to EVERYONE!!!!!!!!

Hi.

I just got back helping my caregiver with the winter clothes.

We brought some out from the shed.

THE SHED IS A HUGE MESS, so we are always getting hurt on something.

I fell back on a box that we hade already brought out.

We brought one box out, of clothes, and we were bringing another one in, BUT I was going down the steps, my caregiver had one end, and I had the other end of the closed plastick box.

Well, I UNFORTUNATLY FORGOT THAT THERE WAS A BOX ON THE GROUND.

I fell back, and we both started CRACKING UP LAUGHING.

Well, Thanks for taking the time to read.

Hi.

How are you all?

I am just sitting in my room on my computer.

I will be telling you what happens in the day, and how its going for me I hope you will enjoy my blog postings, and if you would like you may check out my YouTube account.

my username on youtube is 1992peter


Just go to YouTube, and in the search bar type 1992peter

You will see videos by me.

If you are a YouTube member you can comment on my videos.

Thank you!

199peter

no caps or spaces.

Just as I wrote it.

Hello.

My name is Peter Johann Pachelbel, and I am a tender hearted young man, who cares a LOT about people. All of us are equal in the eyes og God, and he loves us the same. No matter what we have in common. I was born with something called a byladeral cleft pallate, and I have gone through MANY surgeries. I have a problem with my right nostril. I can't breathe through my right side, because a bone blocks it, and my brain comes down to the tip of my upper part of my nose, so the Doctors are trying to debate weather they want to fix it, because they don't want to risk damaging my brain. I have to use several pieces of equipment like a suction machine, a aerosol compresser, and a nebulizer, that I use to help break up secretions. I have LOTS of sinus trouble, because I cannot breathe through my right side, so when my left side gets stopped up, I am in a lot of trouble because i have to breathe through my mouth, and when I have my breathing trouble in my mouth, like when my asthma acts up, I have to really struggle to breathe. I don't have the cillia in my nose, the (Hair like particles that help keep the nose moist and clean, so when I get a sinus infection, the bacteria is able to get in there easier. Sence I can't breathe through my right side, I have to get the junkies out with a machine called a suction machine. It is a machine where I use a small catheter to get the stuff out. It can be kind of grose, but I have to use it. I use the mist aerosol compresser to keep my airways moist. It connects to a long flexible blue tube, that goes to a trap that collects water and then the moist air goes up through another tube that goes into a mask, and into my airways. This is what they use on trach patients that have tokeep their airways moist, because the tracheostomy site bypasses the humidification aspect of the airways.



I am visually impared. I can see 4 out of 20. I was born with microopthalmia, and with glaucoma. But a very kind and gifted Doctor by the name of Dr. Abel was able to go into my right eye, and fix that. He made a pupil. The left eye was not salvagable, because the eye was too small. I have to use several pieces of equipment to help me read, that (Talks to me), and things that help me braille with a machine so I can read. I read with my fingers and the braille consists of dots. The braille cell consists of six dots. Each dot makes a symble or a letter. A group of those dots on a paper makes letters, words senences. I can read really quickly, and I can see print, but not as well as most people. I have a machine that magnifies the letters, and pictures so I can read them better.

I don't let my blindness get me down. I still pursue my life, and will NEVER let anything stop me. I play the piano very well, and a few people say i set the piano on fire, but I just say in the reply, "Go get the water hose than." hahahahahahahahaha. Seriously, I A A STRONG MAN. I can do ANYTHING IF I PUT MY MIND TO IT. ANYTHING. I am a very tallanted man, and am writing this all by myself. I can type up to 100 words per minute. I can play pieces on the piano like the Pachelbel's Canon, the piece Minuet in G Minor by J.S. Bach, a little bit of the Prelude in C Major by J.S. Bach Book I from the Well Tempered Clavier, a Minuet in C Minor by J.S. Bach, from the ANH Bach notebook a Minuet in G Major, by J.S. Bach, a bit of Fur Elise, and a few other pieces. I love the Minuet in G Minor. Its my favorite piece, because its so soothing. When I hear it, I feel myself out on a sommer night, walking, and I can see green flashing lights in front of me. There is a LONG story behind the Minuet, but I will get to that later.



I love medical equipment. I have to use a lot of it, and I have had to spend most of my life around it. Because my parents take special needs children, so they have had to use lots of medical equipment. I have helped with the care of them. I remember when i was first getting the interest in the equipment, I was learning how the suction machine worked. I had a doll that I named Sweet pye, and I would pretend she was sick, and needed to be suctioned out a lot. I put her on oxygen, would check her oxygen, and was CONTINUOUSLY getting into stuff I wasn't suppose to. I would always be in the pulse oximeter, the suction machine, the apnea monitor, the nebulizers, etc. I can't tell you how many times I hav had to hear, "Peter?What are you doing with the suction machine?" I am suctioning my little baby out." She needs to be suctioned. I think I need to put her on some oxygen, because her sats are 82%, and I don't wanna have her going into Respiratory Arrest, and me having to bag her and intubate her. Oh no. That would be BAD. Peter? Please leave the suction machine alone. Its NOT A TOY. But I wanna have it. NOOOOOOO. Leave it alone. A few days later. I do it again. I just want to let you know, that I have been through a lot, but when people say that, and say, "Peter You're a fighter, I say, Listen." " I have had an easy life. There have been people who have been through A WHOLE LOT MORE THAN I HAVE. Sure Ihave to carey a suction machine around with me when I go on long trips, but some children have to carey an apnea monitor, a ventilator, a suction machine, an oxygen cylender, a sim's adapter, vent tubing, mist collars, trach care supplies, and other things. I only have to carey a few things like my portable machine that helps mewrite.

So, complain I DO NOT.

I just say, "Well, I have a very nice life, and Jesus Christ died for me on the cross, so I have a BIG THING to be happy about.

I am tryng to do research on a disorder known as Tay-Sachs disease, which is a disorder, in which an extra gene is present, and it stops the production of an enzyme, that is vital in breaking down GM2 Gangliocides. When these build up in the body, they damage the cells and the child sadly ALWAYS dies between the ages of three and five years of age. I am hurt by this disorder, and hate it when I see or hear of children who have it. I mean, This disorder is very sad. Because the chld loses the ability to sit up, to roll over, to move, to hear to se, to swallow, and to breathe. I've always wondered how these poor children feel in a bed all hooked up not able to do anything. I mean, itsheatbreaking to think of it. Please help in research, and hlp us find the CURE FOR THIS DISORDER.

Thank you for all the support you have given me.

I look forward to posting my blog updates everyday.\
GOD BLESS

Pachelbel's everyday life, what happened today.