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