Really really bad night last night!

Last night really was a hard night. I was up most of the night plugging and these were complete plugs that were very quickly removed, from what I can remember. When you're life is in danger, and you're moving very quickly to remove something from your airway that  shouldn't be there, time seems to be slowing down, but It's very important that you get these plugs out very very quickly. Last night would've been much better if It had been filled with dreams of Harpsichords, and Minuets, however, It would've been much worse if It had been filled with plugs I couldn't get out as quickly as I got them out. So It could've been so much worse. I'm so thankful that I got them out with my In Line suction system, as without an In Line suction system, I'd be in huge trouble. Today has gone pretty smoothly. I saw Heather and went out with her for a few hours taking Mr. LTV 1150 with me,  obviously. My favorite part? I got to play some music at the Music store for her on their keyboard which I always have set to harpsichord mode. I LOVE the harpsichord obviously.  I got a hair cut today, and that went well, after we made some adjustments with my vent circuit, and got me comfortable in their chair!  It was such a blessing to go out with Heather even though I was not feeling good.
That made me feel  somewhat better, because she always knows how to brighten my day.

I'll write more tomorrow, I'm just too tired tonight, and need to hopefully get some more sleep, because I really can't afford another night with plugs. I HATE PLUGGING!

I hope you all have a good night, and that you sleep well, and those with trach and vents, have no plugging episodes during the night.
Thank you, and God Bless.
REMEMBER, ONLY HE, can love you PERFECTLY!!!

Temporary fix Hopefully

Well, after another awful mucous plug where no air went in or out from the ventilator, I finally got on Ebay, and bought something that'll just have to do. It's called a Hybernite Heated tube, and essentially It's the poor man's Heated Circuit, and It's not really used for ventilation of a trach patient, but It's all I've got. Essentially It has no temperature probes, and no digital control and so the hose will be set at a certain temperature, no control over what temp that is, and that'll have to do. I almost got two one for inspiratory side of the circuit, and one for expiratory side of the circuit, but one heated tube is $82, so   well, I'm going to see if one does all right first, and well all right being "What I'm Going To Get!" My DME if you ask me is a very sad story. It's just  ridiculous how they would give you something that's not even suppose to be used in a situation lke I'm having to use it in. If I were working there, they'd probably consider me the massive thorn in their side, but I'd make sure patients got the CORRECT humidity and I don't mean some heater plate that has a dial that you set with no idea what your patient air/oxygen temperature is, and no idea what your heater end's temperature is. That's dangerous, and unacceptable. I can empty the water fairly well, and yeah, I can somehow at 03:00  in the morning deal with a DISC/SENSE alarm because a massive amount of condensation resulted in some pouring into the Sense lines, but twhat If this were a patient with  ALS, or D.M.D. or what if it were a baby who couldn't say, "There's water pouring out of the circuit into my trach," and they have to feel the awful drowning sensation from the  water going where it should NOT GO!! IN THE LUNGS!! It makes me sick and hurts me to think about that, but hey, The HC150s would be OUT THE WINDOW if I worked for my DME, and  LITERALLY!! LOL!! I could put one on a drone, take that drone up 400 feet, and then release the cargo, somewhere below, maybe in the water, or maybesomewhere where It'd be damaged enough to land in pieces somewhere. I don't know, but it wouldn't survive, and would be replaced with something like an HC500, or even better, the MR850, which is truly a wonderful Heater.

But, we'll see what the Hybernite tubing does on my circuit. The only issue is having to change out the circuit every month which is going to be a huge pain, because either I'll have to get a new Hybernite system every month, or I'll have to change everything else out, and leave that Hybernite system in line for three to six months.

It's still nowhere near where I really should be, but Unless I can get sme assistance with what should have been a default humidification, That's gonna have to do.

I still think the idea of taking the awful HC150s up on a drone, and dropping somewhere would be fun. Why? Because drones would be involved, and  If there's a drone involved, I'm gonna be there.

Thanks a lot for reading another blog post, and May God Bless You, And Keep You.

REMEMBER my friends, ONLY HE, can love you PERFECTLY!

Plugging and congestion worsening, and what could have gone very very wrong!

Well, lately, things  are really starting to look uglier in reguards to my health.  I had plug after plug last night, and One where I could not receive air from the ventilator. Those plugs are complete plugs, and they're becoming more frequent.   There's not much that can be done. I'm going to start putting an HME in line with my circuit. I have a humidifier obviously, It's an HC150 as you all know from reading previous posts, but It's PAP therapy grade, so It's not even halfway near trach ventilation standards. I'm going to see what happens if I place a Heate Moisture Exchanger along with the Humidifier inside the ventilator's circuit to see if my humidification gets any better. We'll be going through HMEs continuously, but that's all I can do unless I get a Heated Wire setup. It just means that my DME will be sending a lot more HMEs. HMMMMMMM. Maybe if they have to do that, they'll  have a shorter supply, and they'll realize their patient is ordering a higher stock of HMEs than  normal, and then they'll eventually question me on that, and I'll tell em. "OK, Listen. You guys can't supply me vent grade humidification, so I'm having to use these HMEs, even with the HC150 humidifier, and until I have trach grade humidification that's just how it's gonna have to be, and that's it. If you actually somehow decide to supply me with humidification that is going to help me, and will thin my secretions out, and thus reduce the amount of plugging, and the amount of suctioning, that'll be wonderful, and You'll definitely get a lot less HME orders, at least from me anyways. Not only that, maybe your other patients will appreciate tracheostomy grade humidification as well as ALL PATIENTS WITH TRACHS SHOULD!!

But until that happens, you'll be sending me a lot more HMEs, than you would otherwise!"



LOL!

I'm a nut, and I'm proud of it!! IN OTHER WORDS, I've learned a lesson I won't forget. I take the garbage down every week wo It can be picked up. Well I did something really dumb that could have gone very very wrong. I took the garbage down this morning with Nobody up to watch me, and without my VENT!! I got very dizzy from a massive desat, and well  you all see where this could've went. VERY VERY BADLY!! I won't do that again. I got in, and put my vent on, but seriously, I could've ended up in very very bad condition, and then either somebody driving along on the road would've discovered me, OR my parents would've if I hadn't made it back. That would be very very bad.  What've I learned? 1: I'm to just stay on the vent at all times, and It doesn't matter what I wanna do, If It can't be done on the vent, then somebody else'll have to do it, or well It just will have to not get done. 2: If I'm gonna get the trash, or take it down, DO IT ON THE VENT, AND WHEN MY PARENTS ARE AWAKE, so that if something goes in the wrong direction, I'll be discovered quickly and I'll survive the incident, therefore have further concerts in the future, and not end up dead because I had a massive DESAT, and I went into cardiac arrest!

I will never do what I did this morning, because It could've gone very wrong, and I should know better.

Other than that, I'mstill loving life to the fullest and learning from life's events. I always try to take something out of everything that happens  in life. There's always something that we can learn from things that go on every single day, and we need to look at it and pick out what there is to learn!

Thank you for reading another blog post, and God bless all of you.

REMEMBER, ONLY HE, can love you PERFECTLY!!!

Massive desat last night!

Well, lastnight was not exactly what I called a good night but It could have been so much worse. I had a lot of plugging, and my vent alarm went off several times. I slept fairly well though, but I really wish we could have avoided what happened yesterday evening!

I got off the vent to go help Dad for a few minutes with the lawn mower. Now, with my Dad's health, He h needs help sometimes. I enjoy helping him. Well a few miutes off the vent to help him, and then about one minute of talking to my Mom, would cause me to desat to 53% when I checked my O2  sat. GRRRRRRRRR!!  ROARRRRRR!!!! STUPID DESATS!! Come on. This is ridiculous. I can't even get off the vent for five minutes to do something that I really enjoy doing cause I desat?? Now that's where I'm getting ticked off, because I mean, I would be sad if I couldn't help my dad, because he needs help, and with his back, and hisknees,  he needs help, and even with my desats, I'm pretty strong, when my sats are stable. Well, anyhow, I was really annoyed last night at the desat.
Anyhow, I got back on the vent, and well that's where I've stayed, and it looks like i'll be staying until we can get something figured out.

In other words, the  humidification issue is just making matters worse and I'm really getting really really ticked with the DME I use.

If things don't clear up soon, and we don't get the PROPPER heated humidifier for my vent, It's highly probable we'll be having to go to a different DME company, or at least getting another one for the humidifier, and using the primary one for the other stuff, because the HC150 has GOT TO GO!

I told one of my friends, IF we can get the right type of heater I'm taking this old one out with a sledge hammer, or by fire. LOL!!

Nothing would be more enjoyable than smashing this old CPAP BiLEVEL grade humidifier with a sledge hammer, or taking a match to the thing, and hearing a very very nace CABOOOOOOOOOOOOOM!!

I want it  OUTTA HERE!! I need something like either an HC500, or an MR850 which obviously have Heated wires, and continuously monitor the temperature of the circuit, and the chamber, or tank that the water infuses into!! And then the HC150 ends up being a large mess of plastic crushed by sledge hammer, or charred rubble taken out by fire, and explosion.

LOL, or better yet, to avoid all the work of destroying this thing, the DME can just take the HC150 and I pray every day I never see one of those things again. LOL!!

That sounds  like a much better, and much simpler solution. Or I could attatch it to a drone, take the drone up to 400 feet, and then drop the  HC150 into a river off the drone. LOL! That'd be even better, because there'd be a drone involved in it's destruction!

But anyhow, I'm still thankful for life, and Thanking God every day for it because to me Life is very precious and well, It doesn't matter how much I desat, or how many plugging episodes I have. IT COULD ALWAYS be worse!

Thank you for reading another blog post, and i hope that you all have a very very wonderful rest of the day. On the next post, I will talk about something, or rather somebody very special, who's truly blessed me to such a profound extent in the short time that I have known her.
Our god is wonderful, and I want us to take time to give him Thanks for his never ending mercies, and His PERFECT LOVE!!!

ONLY HE, can love you PERFECTLY!

Drone party, and anothersmall concert!

Well, yesterday, I woke up early for an awesome day. I went to church and loved every second of it. when I got home, I rested until it was time for Mom and I to get ready for the concert. Dad and I packed everything up, including my keyboard and then when Mom and I left, I listened to very beautiful gospel music on the way up there, and I had my cuff inflated, but I waved in time with the music, and when we got there, Mom wasn't sure if we were at the right house, so she went in, and sure enough, we were where we were suppose to be. We got my ventilator, and my suction machine safely in the house, well of course, the vent was on me the whole time and so I just pulled it along with me. Whilst I was greeting everybody, they could tell that I was massively excited. some of my friends had seen the drone, which was charging, but I hadn't seen it yet. So, Mom helped me to the back porch, and I hung out there for a while whilst everybody else was arriving. I stood there and talked to friends, and then I got to tell them about the concert that wold take place later on. It was awesome.

I was so excited, and VERY VERY FLOORED, for what was about to happen. I sat out in the back yard in a chair, and conducted to my own orchestra, and talked to a few people. Mom and Heather moved me out into the shade shortly after where I sat, and listened to classical music in my head, and just had myself a good old time getting ready for the next couple of hours. So, whilst lunch was going on, or whatever meal they were having, I talked to a few people, and then heather  said, "Peter, We got a lil something for you!" Not only was there a cake with a picture of a drone on the top, but, Heather's friend Mat had brought over his motorcycle. I couldn't exactly ride on it, but i was about to sit on it, and when I found that out my heart started RACNG. I  wanted to scream, but that's kinda hard to do with weak diaphragm, and with a trach and a vent. But, I got to get off the vent for about  I'd say three minutes whilst i was sitting on the motorcycle. Ijust had to remember to breathe, which I did by reminding myself every few seconds. My heart  was racing when I got on that motorcycle, because I was sooooooo happy. I was about to get on the thing, and then, after they'd assisted me onto it, they showed me what It felt like when It was stood up, in the position that was used for riding it. It felt indescribably awesome. I put my hands on the steering device, and closed my eyes, pretending to floor it, goin down the road to a very fast Bach Piece. What do you think this Bach piece was? No other than the fifth movement of "Capriccio, Sopra BWV 992, On The Dearture Of His Beloved Brother!" The Postillion's movement, where the postillion blows that post horn, and signals that the horse has arrived! Yeah, that was such an indescribable feeling to do this. It was awwwesome!! I was then to experience somethin even better. They STARTED IT, and let me hear the engine whilst I was on it, and WOAH!!!! All I had to do was Put a helmet on, and  floor it. LOL! But with the trach, and other issues, that would not happen, but Hey, I am beyond thankful that i got to sit on the motorcycle, and rev the engine up by turning the steering device's lever. It felt awesome!! It felt massively wonderful, and tanks of Thankfullness filled my heart, because I was very very greatful for what they were doing for me. I could have started screamin the melody to that movement of "Capriccio," but I didn't have the speaking valve on, because I cannot tolerate the valve, and also, that's kinda hard to do for me with my respiratory issues, but in my head, I was doin it. Floorin the thing, and literally flying down the road to the piece I love and adore so dearly!! And in my head, I was going at the motorcycle's maximum speed. I was told that I road a motorcycle when I was little, but I don't remember it, and obviously, It had to have been wayyyyyyyyyyy before I knew about Classical music, much less "Capriccio!" Otherwise, I'd've been screaming the melody to that piece out. LOL!! It would have looked very very unconventional a lil guy like me goin down the road on one of those things, screamin the melody to a piece like "Capriccio," but I'm sure if I knew about this very very awesome kind of music,  I'd've been doin it, and doin it loud, cause that was wayyyyyyy before I got the trach, and the vent. I must've been two, or three  It seems like Mom told me. I don't remember a thing about that ride, but, hey! Heather and I are goin to eventually go to a game center where there's a simulator, and I'm gonna ride on a simulated motorcycle. Where I can get on, and move around without worrying about the thing flipping me over, all cause I was tryin to conduct to a  fast piece on a motorcycle. I've learned quite a bit about motorcycles lately, and one thing that I learned was that If I tried to move, or jump around or conduct on a motorcycle it would tip over, cause you have to go with the motorcycle and if you start jumpin around, especially whilst one is goin slow, and you're tipped toward one side, You'll learn a very unpleasant lesson, and possibly a PAINFUL lesson. "DO NOT do that whilst You're on one of these things!" I'd imagined myself conducting and moving around on a motorcycle, and even written it about in previous posts on this blog, however, I had no idea that this was unrealistic thinking, ad you can't be jumping and jerking around whilst you're on a motorcycle. Especially when you're getting up to speed, because You're the one who's holding the thing up yourself. If you're trying to conduct to an orchestra in the back whilst the driver is guiding the motorcycle, you're gonna cause him to wreck, and that's not gonna be very much appreciated with the owner or the driver, because He's going to lose control, and/or It's just going to turn over, and the driver might not want you back on his motorcycle.

Heather had to tell me that one day. With my Tourettes, and my excitement sometimes, I jump around A LOT, and some of that I can't help but if I was on a motorcycle, and that all started hapening,  The driver and I would be on the ground very very quickly, and I'd really upset, and maybe even injure the driver. I would not want to injure anybody, accidentally, OR on purpose, so, It's best if I really don't ride on the thing, because, well I've learned that I would not exactly be compatible with a safe motorcycle ride, because of all my movements, and well the temptation to conduct and jump around to an awesome classical piece! I'd make it rough for the driver, and I want people to be as safe as possibly possible on a motorcycle.

Those things are dangerous, and they can be deadly if somebody's not careful, or they do not know what they're doing, or is somebody on the back starts conducting to an orchestra!!!!



Anyhow, I've gotten wayyyyyy off topic here. When I got off the motorcycle, I profusely thanked Mat, the owner, and wished him God's blessings!

Now for the drone part.

I did not exactly get to really do much flying with the drone, but I did get to press some buttons, and move it some. You see, one of the propellors was messed up, or something was not as it should be, and so well, the thing wasn't flying well, and so the owners tried to get it to fly, but with an injured propellor, we couldn't really do that well. I did get to stand there, and got to drone on and on about broken windows, and people getting hit in the head with drones, and I was teasing Heather about which window In her house I should take out first, and who I should hit first with the thing, and we were llauthing. I was standing there loving every second of the event, and talking to Edie, Heather's and Mine's friend, about classical music, and we were having a blast. You see, Edie, has listened to my favorite Piece!! She's listened to "Capriccio!: YAYYYYYYYYYYYYYY!!!!! I was really having a good time talking to her.

finally it was time for me to put on my concert. We got out the keyboard, set the stand up, and Sammy went to set up the amplifier, and  we had to move the keyboard close to the house so that we could connect the amp to it. Once it was connected we found a propper chair for me to sit in, so that I'd be at a correct height on the lawn to perform the concert. The concert started with as I always like to start out with. The Minuet in G Major, well the most commonly known one  from the Anna Magdalena Bach Notebook. And then many pieces later, It was time for the highlight, and what I had almost saved for last, but the couldn't wait anymore, and so, here comes "Aaron's  Minuet In E Flat  Major!"

First I talked about How Aaron had inspired me in my music, and how His mother had taken him to church, and discovered he was waving in time with the music, during Song Service! This still touches me today when I think about it. Finally, I played the Minuet, and then it was on to the next piece. to be honest with you all, It only seemed like five Minutes had elapsed, but I'd been playing for about 40 Minutes, when heather was like, "Peter? Let's end with "Capriccio," cause you've been goin for like 40-45 minutes and people are leaving!" So, I ended with that piece and then what do you know? Edie, our friend, was giving me a standing ovation, and I was so happy, and touched by that. It meant universes to me, and tanks and tanks of thankfullness to me. I was ecstatic at that Moment, and told everybody to give Sammy a hand for allowing me to use the amplifier! It was such a blessing to be able to use my friend's amplifier. That's a delicate andvery expensive machine, and to be able to play my music on it, meant more  than words or anything could describe. It meant so much to me, and I'm forever greatful for the blessingof being allowed to use this piece of equipment for the concert. Anyhow, the concert finally ended, and I was so greatful for the blessing of everybody's support, and their enjoyment of the music from the great composers.

I almost put my Mother to sleep with my Minuet that I've entitled the "Mobile Minuet!" That's what a mobile is meant for. to calm a baby down and/or put them to sleep. So, I guess the Minuet about did that to my Mother. LOL!

It was so wonderful to be able to play for everybody, and on the way home, Mom told me to inflate my tracheostomy's cuff to rest my lungs, and so I did, whilst we listened to music on the way home, me waving in time with the music.

The arty was everything I wanted, and MORE. It was wonderful to have this, and i was beyond thankful!!

Thank you to all who contributed and who set it up for me. It really means sooooooo much.

I want you all to know that you truly have blessed me, and all of you have a special place in my heart!


May  God bless you and keep you.
REMEMBER, ONLY HE, can love you PERFECTLY!!

THE DAYY IS HERE!!

WOAH!! The month of may has flown by sooooooooo quickly. I can't believe  I am saying this, but the day of my drone flight is HERE.  NOT TOMORROW, Not next week, Not next month, but TODAY, I am going to be flying a REAL DRONE. ON THIS DAY. I'm amazed at this thought. It just amazes me that this day is HERE. I'm here in this very day, and on this very day, I will FLY A REAL DRONE. A small drone or so I'm told, but a drone, never the less. It'll be a drone, and the drone will be in my hands. This is very serious stuff to me, and I'm just so excited.

I'm feeling really really well today on the ventilator, and ocygenating well. I had some plugging episodes last night, and in fact one complete plug, but  being that I have my In Line suction set up already, I can take care of these very quickly. At night I'm really on a lot of equipment. More than most trach and ventilator patients. I was on my vent, the pulse ox from my ICu monitor, the NIBP, or blood Pressure monitor that's incorperated into my ICU monitor, I had my In Line suction system connected to the suction machine, I was on my feeding pump, and I almost put my ECG monitor on to monitor my respiratory status, but then I check, and I'm completely out of electrodes! I'm going to have to get more.  I really don't remember what I dreamed about last night, but I would not doubt that It had to do something with this upcoming drone party that's happening TODAY, and probably a lil about harpsichords, and maybe Hubbard tanks, although, I have not really dreamed about Hubbard tanks lately.

I'm feeling really well today, and am fixing to go to church.

Video, and pictures will be on Facebook, and video if not pictures too will be on the blog. I'm fixing to pack up my ventilator and get things ready for church, and then after that I'll come home, and put my portable vent on the charger to charge the battery some, and use my home ventilator that's on it's stand until It's time to go to the party, and go after that, when I leave, I'll go on my portable transport ventilator once again. I  really prefer the humidifier VS the HME, but then again, the Humidifier as I've stated is still not vent grade humidification, but It's what I'm going to get.


I'm finished droning on about humidification and vents, because I just don't feel like anymore. Let's leave it at this.
If I get a heated wire humidifier It'll be a MASSIVe miracle, because well that is VERY VERY VERY unlikely withthe very very low class DME service I have. If I don't, which is more than highly likely the case, It won't shock me, because, ummmmm, It doesn't matter what kind of a script my Dr. sends in for the order for the RIGHt kind of humidifier. The point is, That's more than likely going to be another futile attempt with a heated wire system. In other words, We're dealing with futility here in  the lines of a vent quality humidifier.

In other words, "It's not  happenin!!"

Thank you for reading my blog post and may you all have a massively wonderfully wonderful day. May God's blessings surround you, and may God shelter you safely in his loving arms, where no harm can come to you. May you know the power and the wonder of our god, and may you do your best to give him praises, and witness for Jesus every single place that you go, every single day of your life. May his blessings pour down on you like  the universe's worst rain storm, and may you know each new mercy that comes to you each and every single day of your life. May Our God help you draw closer and closer and closer to him.

REMEMBER, INLY HE, can love you PERFECTLY!!!!!

Harpsichord concert yesterday, and two more days until!

YEAHHHHHH! I got to play my favorite Musical Instrument once again. The HARPSICHORD!! We went in yesterday after calling the director of the Music Department, and after she gave us the Go Ahead.  It was absolutely wonderful to be able to play that wonderful instrument. We were there for about an hour or so, and during the concert whe essentially said, "Just stay as long as you want!" That had me floored, and I said, OK, well then I'll just move in!" Well, Heather, and the director both laughed, and then I handed Heather the Camera from my left pocket, and said, "We're gonna record the whole entire concert!" So she started the video, and I played each piece after naming that piece, and then at the end as always, I played "Capriccio!" After around 40 minutes of recording, the concert was through, and after I'd had myself a good long session at my beloved instrument, we went so that I could thank the director, and then after that, we went outside, and I got quite excited when I was telling her the story of Aaron, and Heather had to remind me to remain calm. she said I did an amazing job, and so that truly meant a lot to me, and it was not exactly easy, but I did remain calm. I just love to play my music, and love to bless other people.

In other words, we have two days until  my drone party occurs at heather's House!

I'm so excited. Two days from now, at  this time, I'll probably be at home and I'll most certainly have the status as "Have Flown Drone before!"

I'm not going to hold the status as "Never Flown Drone before," much longer.

This status will remain for less than 48 hours, and then It'll be a former status, but no longer a running status,  because most likely 48 hours from this exact time, I'll be home telling everybody about the drone flight, and uploading pictures/videos, to Facebook, AND Youtube. NO DOUBT, there WILL BE VIDEO, and A LOT OF IT!! yesterday's video which was around 40 minutes long, took over three hours to upload to YouTube and I was like, "Is this normal, or is our Internet giving out again?" LOL

Things have changed so drastically the last year, and they're still changing. I'll be flying a drone, and very very soon!

I'll be on the ventilator obviously, but ya know, who says You can't fly a drone on a ventilator?

I say YOU CAN!

I'm about to do it, and do it on video!

In other words, still no word from the Dr. on the Heated Wire setup they faxed an order for into my DME. I'd say the DME probably said, "We don't have them, and we're not gonna order them!"

I'm still dealing with a  load of thick and green secretions, and still very congested plugging numerous times every hour.

But hey, DMEs usually are not gonna do anymore than they have to. I've really kind of learned this lesson the hard way.

but, I'm still profoundly thankful for life, and am so excited about the Drone I'm going to be flying!

Lately with all of the things I've had to be thankful for, There's this song by Raffi that I just LOVE, and have for a number of years. It's called "Thanks A Lot!"

I heard it in 2010 when I was reccovering from the third operation to open my nose up. Long story short, my nose was completely closed, and it took three attempts to actually get it to stay open, because scar tissue kept closing it up.

but anyhow, I love this song.

I will post the link of the video tomorrow, but you know, I've had that song in my head a lot lately, and have listened to it numerous times lately. I tell Heather all the time that If I tried to explain how thankful that I was for what her, and her family had done for me, and what Mikey the Drone's  owner was about to do to me, and other things that've blessed me, If I'd  attempted to explain this stuff, I'd never get finished with it, so It all ends up coming down to Three simple words, and that's it.

Those words that I said to Heather?

"Thanks A Lot!"

It all has to come down to those three words, to avoid a never ending attempt to thank Heather, and her family/friends.

Heather Has heard this song, as I sent  it to her a couple of weeks ago, when the scheduling of the Drone party was inprogress.

If you catch me singing that song, well You'll know i'm indescribably indescribably happy! And trust me, I'm DEAD SERIOUS!! 

I'm seriously about to fly a REAL DRONE and play for several people on my keyboard.

If I sing that song, It'd most likely take place whilst I was flyin that drone, cause when I'm flying that thing, It's gonna be profound, and It might just be a small drone, but seriously Little drone, or house sized drone,  a drone, if It's a drone, well then It's a drone, so if I'm flying a $3000 drone, or a $20 drone, well the point is, I'm flying a drone.

LOL!

A drone is a drone, and if you're flying a drone, no matter how tiny winny it is, you're flyin a drone.

That song by Raffi is so beautiful, and It reminds me of how thankful I am, and what's happened to me.

It reminds me of how blessed we truly are!

I'm beyond excited about this drone party, and I'm literally counting down the days on Facebook, and have droned on about this event so much that My Dad is like, "OK, Peter?

I don't want to hear about it anymore!!

I know I've got a habit of droning on, and droning on, but well that's what got me my Doctorate in Droning.

LOL!

Thank you so much for listening and/or reading another blog post, and may  God's blessings be with you my friends.

Remember everybody, ONLY HE, can love you PERFECTLY!!

Going to play the harpsichord Tomorrow!

Who says just cause you're on a ventilator means you can't play the harpsichord? I say, YOU CAN, and it does not matter if you are on, or off a ventilator. Who says tomorrow I get to go and play the harpsichord at Campbellsville University? Well, the director of Music Department, the one who runs the department! who is gonna go play the harpsichord tomorrow? Me! How do I feel about that,  I've been so excited all day, and well yesterday when I found out it was happening tomorrow, I went VERY wild. Yeah, people can still get wild on ventilators. This time,  however, I am not going to go barreling through the house with my ventilator, thus not seeing Heather who then gets HIT  by the suite case. That's not gonna happen. Tomorrow, I'm going to wake up, get dressed in suit, and looking the best possible, even though with my trach, I won't be able to put a tye on, but hey, that's something I'm still having to get use to, and that is NOT easy to do, but I am just going to have to accept the fact that a tye is out of the question because of the trach, and especially now that I'm a 24 hour vent user.

Anyhow, tomorrow, Heather and I are goin t and she's going to listen whilst i play my favorite instrument. The harpsichord! I'm beyond excited. I'm beyond ecstatic about this! O, and there will certainly be video. I'm gonna try to video the whole entire concert that I'm putting on.



Speaking of concert, I only have four more days until the big drone party, and until I put on a concert at Heather's house for all of her friends, and my friends. I'm  counting the days down one by one.

There is certainly going to be video footage of this too, and not only the concert, but the drone flight as well, and who knows, I just might sing.

I'd sing about how thankful I was. About how thankful I am for so many things. Our God is truly truly truly mighty, and he deserves to hear songs of greatfullness, and of thanks giving, and even though It's not thanks Giving Holliday, to me, every day is a day of Thanks Giving, well for me it is anyways.

Of course, it  should be for every single one of us. But with all that's gone on with me this year, I might have gone from partially vent dependant to completely nable to get off the machine, but hey, when the year started I was talking about needing to see a Hubbard tank, and needing to play the harpsichord, and I could honestly say I Never had flown a drone or felt a drone, or even held a drone inside of it's box, but well, I can't say I've never held a drone in it's box, and four days from now, I  will have officially taken up status as Drone flier, so the statuses that may be present today, four days from now at this time, I'll have touched a drone, held a drone, not just in the box, but Literally out in the air, IN MY  HANDS, and will have flown a drone, with the drone's controls in my very own hands. So next week at this time, I'll be able to truthfully say, "I flew a drone!"



I'm so excited. This year just keeps on droning on, and getting better and better and better and better. It's not even halfway over either.

There will be much more coming, and you will hear about everything.  If I sing of thanksgiving, you will know I'm very very happy.

I plan on singing songs I've made up about Heather's and Sammy's windows too, but that's for a later post.

LOL.

God bless you all, and may his new mercies be poured out upon you, and may you always remember to give thanks to the one who died for us all.

The one, who gave his very very own LIFE for who?

The biggest drone known to man?

NO!

For a harpsichord?

NO!

FOR US!!

Remember, ONLY HE, can love you PERFECTLY!!!!

Still can't get off the ventilator, and church service!

Well, It seems that I'm still unable to get off the ventilator period. I desat if I try. So we'll just stay on the ventilator. I'm also having more plugs, but I'm maintaining that to the best of my ability with the humidification that I have in line with the vent. Of course, as stated previously, that dial is maxed out, and unless I get a heated wire humidifier, that's where it's going to stay.



In other words,  Dad and I went to church yesterday, and I JUST LOVED IT. It was with my ventilator and the suitecase that the LTV ventilator is in. With the vent requirements I need,  I don't think I'd be able to tolerate a Trilogy. Even in the hospital, I tolerated the Servo Ventilator better than I did with the BiPAP machine they had me on for a lot of my stay. This was before I got the trach. But anyhow, At church, I could not speak because of the ventilator, but somebody came up to me, and they made my day with what they said. They said Hello to me, and Dad said, "He can't speak. He's on the vent." And she said, "Well, Peter? Just keep that smile, and we'll be great!" That made me even happier! That really really made me feel awesome. Ya know, even though I cannot speak on the ventilator, I find my way of communicating, and find my ways of enjoying my life. Being on a ventilator is not the end of the world. Being on the ventilator for me is natural tome.  It may restrict me to the circuit's length, but hey,  my keyboard is in my reach, so that's what matters. Hahaha.


In other words, I'm practicing my piano a lot for the upcoming drone party. It's only in SIX DAYS!! Time flies when you're waiting for something massive to occur, and no doubt, this thing is going to be massive!!

Thank you for reading another blog post, and may god bless you and keep you! REMEMBER, ONLY HE, can love you PERFECTLY!!

Sunday can't wait, and I just HAVE to tell you right now!

Well, Sunday just can't wait, and I just want to tell you all so badly what's going on with me. In just EIGHT days from today, and today is quickly passing on. I don't think I  am going to wait anymore to tell you all about what is happening.

In just EIGHT days from today, that is until today leaves us, I am going to be going to a party somebody has planned FOR ME. Guess who that somebody is. Heather. My dear friend. This isn't just any party. It's a drone, and musical party. I'm going to be flying somebody's drone. He's one of Heather's friends, and he's going to let me fly  his drone, and I've invited several people, and so when I started doin that, Heather just said, "OK, we're gonna throw you a party! A DRONE PARTY!!" Words do nothing to describe the excitement that has been accumulating minute by minute for this thing. We only have EIGHT more days, and the month has gone by SO QUICKLY! It just amazes me how fast time flies when something exciting is about to happen to me. IT FLIES!!

What's going to happen at this drone party? Several things. There is going to be a cook out, and  obviously there will be drone flight. There's going to be music, from my keyboard  that I'm going to be bringing, and not only that, but if it's compatible with the amp that Sammy has for his guitars, well then, it's going to be connected to the amp, and  we're not going to blow speakers, so I can't just max out everything. That'd be BAD. I don't think Sammy wants an amp with it's speakers blown out of the thing! CABOOOOOOOOOOOOOOOOM!! LOL

What good is an amplifier with blown out speakers? I don't know, unless you fixed the speakers, I guess that's it for your amp if you do something that blows your speakers. So, let's try to avoid that!!  LOL! But anyhow, I'm playing my keyboard, and I'm BEYOND  excited for that, and oh yeah,  Who knows, I might even sing! LOL Sing about Hubbard tanks, or Drones. Sing about the whirlypool in Hubbard tanks!! LOL Whirly pool is another weird name for whirlpool I made up, but it's not a real word. LOL. Whirlypool!! What does a whirlpool do? It WHIRLS so would that be considered WHIRLY? LOL

Anyhow, I might sing about Drones, and Harpsichords, and oh yeah, CRASHING THE DRONE INTO Heather's WINDOW!! I've already started making songs up about that.

LOL!

HMM, as thankful as I am, I wonder if I will sing about how thankful I am, or something about thankfullness. HMMMMM. That gives me some ideas, or rather AN IDEA!! HMMMMM.



But when I play the keyboard, I will be playing the Minuet I composed for Aaron. I will be telling his story, and how he's inspired me to play my classical music. YES, I am so excited. Perhaps, that's what I'm MOST excited about. PERHAPS that's the biggest thing that's causing my excitement level to sky rocketwith tanks of excitement just waiting to pour themselvel out, or maybe that's already happening!

Anyhow, this drone party is coming very very soon.

I'm trying to think what I'll drone on, and drone on about then. LOL! Thank you all very much, and God bless you all.
REMEMBER ONLY HE, can love you PERFECTLY!

Possible Pneumonia, and other issues, but a HUGE blessing from God!

Well, as you all know, I've had quite a few health problems lately and now can't even get off the vent for more than a couple of minutes before my sats start tanking. I am officially 24/7 vent dependant, but I'm still loving life.

I went to see my pulmonary Dr. Wednesday, and He in seeing that things were not very good, ordered, an ABG, CXR, that's a Chest X-Ray, a CBC, and a sputum culture.

The  CXR showed a spot on the lower left lung and he's not sure what it could be, so I'mon very high doses of Antibiotics and he's treating this just as if this were Pneumonia.

If this is Pneumonia, than since I'm on the ventilator, it could be considered VAP.

If you do not  know what VAP is, it is short for Ventilator Associated Pneumonia.

That's a risk for every single patient that is on a ventilator, and especially those who are on it 24/7 like I am.

I have not gotten the results for the labs, culture, and ABGs yet, so  further updates will follow as to what they show. Being that I continuously control my own vent settings, I'm closely monitoring my oxygen sat, and since I don't have CO2 monitoring, like some trach patients are getting now, I have to go by the pulse ox readings, and then by what shows up on the blood gases.

For now however, I'm vent a vent dependant who loves classical music, and who plays it.

Speaking of classical music, I went out with heather, and went to Krystal music, and I played the keyboard in the harpsichord mode.

I'd say we were there for about 30 or so minuets and then in the final minutes there, as we were getting my ventilator which is in a suitecase out, it was getting tangled in cables and stuff and heather said, "We're gonna destroy everything trying to get this thing out!"

I was dying laughing, and it was just sooooo funny because on the way out, I stepped on her toe and she said "OW," and then we almost got the circuit caught in the door of the place before we got out.

Maybe the vent had decided it wanted to stay.

LOL!

Maybe ventilators can play harpsichords.

Or at least LTV vents.

I am so thankful for the wonderful time that we had.

It was truly another blessing to add to the list.

Well, Sunday I've decided that I'm going to tell you all about the upcoming event that's occuring on the 22nd.

It's coming up so I'll go ahead and tell you all about it.

It has to do with Drones, my keyboard getting hooked up to Sammy's amplifier, and a few other things that I've got coming.

A few more things to add to the list of blessings that just keep on adding up and adding up.



In other words, I just received a GIGANTIC blessing from God today.

Well, my ventilator circuitpulls on my trach quite a bit, and It's caused some issues to where since I have had the trach, I've had to tighten the trach ties up to an extent where my trach sight is always red, or almost always red, and not only that, my neck always has irritation around it, and that's going to cause a huge problem eventually.

Well we loosened my trach ties up today and that caused some pulling on my trach, which really really was uncomfortable.

Whilst Heather and I went out, Dad made a circuit support out of shoe laces, but that was only whilst I went out, and whilst I had my scarf around the trach tube to hide the bandages.

When I got home and took the scarf off, there was not really a way to keep the circuit from pulling, so I had to hold it.

Now, here's where I rant about the DME again. UGH. TRUST ME, if there were other vent DMEs in my state, I'd be using something else, depending on what they had, and most likely they'd certainly be better than the current DME.

GRRRRR.

Last October, I'd requested a support arm for the ventilator circuit.
They said they had ordered it. One month later, it still was not at my house. Two months later in DECEMBER it was still no where  to be seen. I called them. "O, we ordered it so it should be there sometime!" YEAH RIGHT. It's MAY, and slast month, I was just like, "FORGET IT!" Or rather in January I was like "JUST FORGET it!!"

Well, the irritation from the trach sight was getting worse becauseof the tight fitting trach ties, and it has become an issue.

If that gets INTO my stoma, we'd have a VERY VERY situation on our hands.

No doubt, it would lead to another hospital  stay, and operations, which means what?

MORE NARCOTICS!! I HATE HATE HATE narcotics.

OK, so if you need them, yeah, I guess you need them, but if you can get off them, PLEASE TAKE MY ADVICE, and GET OFF THEM A.S.A.P. I just don't see how people can get a high from that stuff. I hate the way it makes me feel. It makes me have horrific dreams, vomit, stops up my GI tract, and GRRRRR I just want to scream thinking of those drugs.

I HATE THEM!! And I've had too much experience with them, as I've had more operations than I can count, but not only that, I've had one episode  in 2013 that today, we still are not sure what caused it, but I lost the ability to move from the waiste down for 12 days, and that's when I got the G-Tube. I'm still requiring the G-Tube, but since the trach, the Neuropathy  the hearing loss, and other issues went away  however, the G-Tube will stay.
Anyhow, I was in horrific pain when I had that hospitalization where it felt like my body was on fire and I was  unable to move from my waiste down. A few people have wondered if it might be a case of Guillain Barre Syndrome, but that is very unlikely.

Anyways I've started droning about another topic totally different from the trach area irritation, and the other issues we were droning about.

Sometimes you drone about something so much, you start droning about other things whilst you are at it.

LOL!

Well, a few days ago, I asked my Dad if he had a microphone stand outside in another building, because he use to preach and so we both went out and we looked today, and GUESS WHAT!!

WE FOUND ONE!! WE FOUND something that I'm currently using as my circuit's support whilst I'm typing this long blog post!

YEAHHHHHHHHH!!

It works so well, and I'm sooo thankful!!

Now I have my trach ties much looser, so that my trach area can heal.

Praise the Lord for my wonderful parents.

I'm beyond thankful right now for them.



In other words, I've decided to try one more time for a Heated Wire Humidifier, and then I'll have to consider it a lost cause.

At my Dr. the other day, I told him the situation, and was so descriptive, I told him how to write the script, and told him to write that I was NOT tolerating the HC150 heater. I told him to tell the DME when they called saying that they don't have those kinds of Fisher and Paykel Heaters, "LISTEN.

If you don't have them, you have the written script saying that the patients needs them, so GET THEM!!"

I don't like being rude, or telling other to do something in rude ways, but I've learned a hard lesson, and that's sometimes with DMEs, you have to get a little bit more demanding than you might otherwise want to be.

Do I like that? NO, because I don'tlike getting demanding at all, but sadly I've learned that this is how you have to be at certain times.

Well that's the situation I'm in right now, so we'll see what becomes of this, and we'll see what becomes of my DME.

LOL!
In other words, I'm still loving my life, and Thanking God for it every single day.

Thank you for reading this gigantic long post. If what I've done is not considered droning, than, well It just has to be.

God bless you all and REMEMBER everyone!

ONLY HE, can love you PERFECTLY!!

Yesterday I went to church, on the ventilator!

Well, yesterday, I went to church with my parents, and loved the whole thing, although I couldn't sing, and didn't say a word. Reason? Now my ventilator must be on me at all times, and so that meant it came with me to church, and so my cuff was inflated so this meant that no air escaped above the tube, and I had tight control over my ventilation and oxygenation needs. This was OK with me, however Mom and Dad had to do all of the talking for me, and so everybody there when they would shake my hand, and say good morning to me, I would wave at them, and smile, and Mom would tell them why I couldn't speak. Due to the issues with maintaining my O2 sats above the 60s without the ventilator, this ventilator has constantly droned in the background and I've listened to the rhythmic breaths come at exactly every  three seconds, which is exactly 20 times per minute.

Anyhow, going to church was a blessing, and they sang very beautifully as always!! We sang "Faith Of Our Mother," and "When We All Get To Heaven!" Well, THEY SANG!!

I sang from my heart!

I really was blessed that even though I was on the ventilator, I could still go to church, and that I could still enjoy the service which was very beautiful!

God bless you all, andmay you  each have a wonderful wonderfl rest of your week with God guiding each and every step you  take and breath you take.

Remember to breathe guys.

REMEMBER, ONLY HE, can love you PERFECTLY!!!

My very special Mother!

I am so thankful beyond description for my Mother. Words do NOTHING to describe how much my Mother has blessed me.

When I was three weeks old, she picked me up from the hospital in the NICU, and she took me home adopted me, and there I'gve lived for 24 years in a wonderful wonderful house with wonderful parents who've nurtured me, keptme safe, and taught me all about Jesus.

When I was a wee lil guy, my Mother made me a blanket and brailled my Birthday on it, so that I could feel it and this has always been, and always is going to be very special to me. She's the one who stuck by me through the numerous operations and procedures, and who had to deal with the patient who droned on about the medical equipment like he was the Dr. Not that many people will tell you the workings of a Cardiopulmonary Bypass macchine at eight years old and not many people will drone on about ECMO, and ventilators at the age of nine, but I did, and Mom was the one who had to remind me to be quiet so that the Drs. could perform their work, and could conduct the examination.

When I had my trach, and when I woke up from surgery crying for my best friend Sammy, and mad that I could not speak, Mom was the one who said, "Peter? You are OK. Sammy isn't here, but you can call him later, but you need to rest and let the pain medications do their job!" When I couldn't see my ventilator's settings because of the ventilator circuit that was weighing heavy on my trach making it very painful to move, my Mom read them to me, and when I wrote on my Iphone that I was upset that Ineeded the trach inthe first  place she prayed with me, and told me that It was the best thing for me.

It's times like this I consider very special. My mom would often pray with me and we'd let Jesus take my frustration, and/or anger about a situation away. In fact last night, I came to her very upset because Aaron's Mother had posted on Facebook that he was desatting, requiring a lot of oxygen, and having to be bagged, and so her and I had a word of prayer for Aaron and I rested well that night knowing that Aaron was safe in the arms of Jesus. I'm so thankful for times like last night when Mom was there with me, and when we went to Jesus in prayer!


Another very very special thing about my Mommy is that she always sends me Drone videos that she finds online, and I LOVE watching footage from a Drone!

But most importantly, My Mother has loved me, and has given everything that she has to make sure I had as healthy and as pleasant of a life as possibly possible, and no doubt, she's done such a profoundly wonderful job at that, because I'm always happy, and always have a reason to laugh.

Thank you Mommy for being such a wonderful Mother and for fighting forme! I have so much to be thankful for, and you're at the top of thelist, next to Jesus!

God bless you all!

REMEMBER, ONLY HE, can love you PERFECTLY!!

Ventilator still droning continuously, and plugging episodes increasing!

Well, here lately as you all know, I'm having a lot of uncalled for issues, and am tiring easier. I'm still on the ventilator continuously, and still not holding my sats above the 50s and 60s otherwise which means, it looks like on the vent is where we stay!

In other words, I'm plugging in my airways more, and suctioning to keep my airways clear is a continuous battle! I'm going to the Pulmonary Dr. that monitors my ventilation/oxygenation this upcoming week and we'll see what he has to say. Honestly, if you want me to tell you what I think is causing the plugging? It's simple.  I need a PROPPER humidifier set up and REALLY BADLY!! As you've probably read in previous posts I talk about the type of humidification I have and what I honestly think is one of the worst ways you can provide humidity to your patients who are ventilator users, and  I talk about heated wire humidifier setups and even give you an example using baby Aiden as our patient, which is not really a real patient, but is an example patient!

Central Apnea wise, I have no idea what's going on in that department, except maybe I just need the ventilator more and maybe that'll decrease at some point in time, and maybe not! BUT, HEY, I've got a ventilator to breathe forme, when my brain decides it doesn't want to remember to breathe, and I've got a wonderful family who are there making sure I have the BEST CARE POSSIBLE!!

I'm VERY thankful! Speaking of Mother's day that's comin up soon, WOW, do I have a lot of things to be thqankful for, and my Mamma is one of them! I'll post a blog post on Mother's day in regards to my wonderful mother!

In other words, I'm still loving life, playing classical music be that on the ventilator that is, and  yeah I'm just waiting for a HUUUUUGE event that's coming up in 16 days!! 16 days and counting! We're heading there, and I know it!



Thank you for reading another blog post, and may God bless you and Keep you all safe in his loving arms.

REMEMBER YOU ALL, ONLY HE, can love you PERFECTLY!!!!!!

Still completely on the ventilator, but loving my music!

Well, not much has happened lately except for the ventilator use continuing 24 hours of the day. I'm just loving life though, and continuously on YouTube listening to my classical music.

Some might ask you what it's like to be on the vent continuously! It's pretty simple for me, as I have a pole mount for my ventilator, and so I can wheel it around the house, and also most of what i do is hang out in my room on YouTube listening to classical music, or watching drone videos.

I've seen a few funny drone videos lately, and they're housed in a YouTube playlist called "Droning gone Wrong!"

But anyhow, being on the vent continuously means that 24/7 my ventilator's drone is ever present, giving me breaths at 30-30 breaths per minute, and giving me these breaths through my trach tube which has a cuff and which remains inflated whilst I'm on the ventilator. The suction system is closed, so that every single time I have to suction my trach out, It's easy to do, and I don't have to disconnect the circuit  whichisn't good being performed a lot, because of the PEEP level I'm on and the increased risk of infection! as has been the casesince the trach, and will most likely be the case forever, I have the humidity setting maxed out on the humidifier, and this does the job that you're gonna get done with a Fisher and Paykel HC150  humidifier!



But life is still wonderful, because I have my warm house to live in, and my classical music and drone videos! Other than that, things have been peaceful and uneventful for me except for the desats if I try to get off the ventilator.

Thank you for reading another blog post. God bless you all.

REMEMBEr, ONLY HE, can love you PERFECTLY!!!!!

Plugging, and massive plug pulled out after IPV!!

Well, I wasn't feeling that great this morning. I performed Aggressive IPV with  my vent, with my Albuterol and Ipratropium Bromide, and during the IPV treatment, I discovered that not only was I plugging in my trach, I was plugging in my lungs. I got a MASSIVE plug out this morning, and whilst I still am on the vent completely, I feel so much better. My ventilator, whilst It does not go up to 300 Breaths per Minute like an IP ventilator does, It's better than what I'd get if I had a Trilogy. THANK GOD I don't have a Trilogy, and I have an LTV, otherwise,  I'd be in trouble. After my IPV, I feel so much better.  Our plan for today is IPV every four hours and then tomorrow I'll be calling the Pulmonologist and getting an appointment.

In other words, I've watched two awesome videos, one of the building of a harpsichord, and one of the building of a grand piano. The harpsichord video was my favorite video though. In other news, I'm watching full blown Harpsichord concerts. Now that's fun to watch on YouTube. If you want something to do for entertainment, there's a YouTube channel thathas several full blown harpsichord concerts, and let me tell you, These are AWESOME!!!!  I wathed this one which is my favorite cconcert twice yesterday. Why is it my favorite? Because It's got a couple of my favorite pieces on there, and yeah, It's got the NUMBER ONE harpsichord work that I LOVE. You all aut to know what that is right now after hearing me drone Non-Stop about it throughout this blog!! If you're new to the blog, and this is your first read post, well than that piece is as follows and will be mentioned somany more times  in the future!!

"Capriccio Sopra, BWV 992, On TheDeparture Of His Beloved Brother," by Johann Sebastian Bach!

Do I need to drone on about this piece in this post? I don't think I need to do that right now, because I want to get back to YouTube and watch more concerts, but I'll save the massive droning for another post  and when I say massive, It's ALWAYS MASSIVE!! LOL

In other words, I'm very excited for Aaron and his family. He got a new wheelchair a few days ago, and that's another answer to their prayers, as well as Mine!! God is truly good. He's PERFECT!!

So give God thanks for this!!

I want to thank those of you who read my blog and who follow it. I don't know how many do that, but I know a few!! It's very nice to have a blog that I can post what's going on in my movement of the Symphony we call LIFE! Yeah, I just have to relate everything around me to music. LOL!!!  


God bless you all!!

REMEMBER, Only HE, can love you PERFECTLY!!!!!!