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!!