Please take time to Pray for Aaron and his family. He was moved to the PICu last night and he's doing somewhat better but he is not on his ventilator anymore and is on the PICu ventilator. Let me explain what this means. OK? The LTV ventilator is his, home ventilator. The 1150 is also the same kind of ventilator I use. It's a great ventilator in the ICu and at home, but It's limited by a few things in that it only goes up to 80 Breaths Per Minuet whereas the Drager Evita XL vent that Aaron is on goes up to 100 in conventional modes and can reach a maximum of 300 in the Mode known as "APRV!!" The PEEP on the LTVs can only go up to 20 whereas the Evita XL ventilators if I'm right reach a High PEEP of 35cmH2O! I'd have to look at my simulator again, but the point is, the Drager vents have much more functions and on that vent you can control the precise amount of FiO2! When I read that Aaron was on the PICu ventilator It really saddened me, but I know that God is working through Aaron to inspire others. He's certainly worked through Aaron to inspire me to compose Music and has made classical music almost all I think about. I'm asking that you Pray for the things as follows.
Pray that Aaron will get well and will be home soon.
Please pray that Jesus will speak to Aaron's Mamma in the way that Only Our Lord, Counselor, Physician, and Savior can giving her what she needs to hear. Please please pray that Jesus will Speak to Aaron's Family and friends giving them comfort. Also, Please pray that jesus will work through that healthcare staff including cardiologists, M.D.s Respiratory Therapists, Nurses, etc and help them to know EXACTLY what needs to be done to make Aaron better. Please pray that Aaron will hear Jesus's voice and that he will hold onto the hand of Jesus. Please pray that somehow, my Music or something I do does bless this Family somehow. I've had Aaron put into my heart and I know it is for a reason. Guys? Friends? Please pray that somehow I can bless Little Aaron and his special family SOMEHOW. I don't know how It'd happen, but God can make that happen, yet I TAKE NO CREDIT for it. Please pray that somehow I can help comfort Aaron and his family in some way.
Thank you for your patience with my LONG blog posts and with my continuous droning on, because afterall, I have a Doctorate in Droning as you know.
God Bless.
Remember, ONLY HE, can Love You PERFECTLY!!!!!
You are about read the blog of Peter Johann. In this blog I talk about numerous things including my love for classical music, my love for my savior Jesus Christ, and my interest in the medical field. I love life for what God gave me, and so I will share my life with you, and all the blessings I have received.
Thursday, March 31, 2016
Geneticist appointment and maybe a pulse ox script!
Well It's too the Geneticist today and I'm going to see if he will write me a script for a pulse ox monitor. I'm going to if I have anything to do with it, CHOOSE which pulse ox I get, because I honestly have learned that DME provicers don't usually ask you what option you like, much less give you the choices, but I know from research, how to handel DME providers, and I plan on literally choosing which pulse ox I get. That's what I did with my LTV ventilator. When I was in the Intensive Care Unit after the trach, I wrote out with my Iphone after stating several times before the trach to several people, "I DO NOT, want a Trilogy. I want an LTV ventilator!" They askedme why I didn't want the Trilogy and I gave the whole picture of what I LOVED about the LTV ventilator. It's an ICU ventilator essentially. I told them, "DO NOT, give me the Trilogy!" So I hope to goodness i can push and get the oximeter I want. That is? A Maximo Radical 8 Pulse Oximeter. You might be asking "Why do you actually want that exact pulse ox?" Well It's portable, It's packed with features, and It is a very very special pulse ox, because It's what Aaron uses. He has a Radical 8 oximeter. Aaron has become very very very special to me. He's become somebody that has inspired me to love classical music even more. I mean, Since reading his blog, my classical music hobby is now an addiction. It's apart of me. It's almost all I talk about to my friends now days.
Speaking of Aaron, please continue to lift him up in prayer asHe's really sick in the hospital with very high Oxygen Flow Rates and It really saddens me to hear this but I'm telling people as many people as I can to pray for Aaron, and I hope all that see this will stop for a Minuet and say a Prayer for Aaron and his family.
Thank you very much, and may God bless you and Keep you all safe. Remember!
ONLY HE, can Love you PERFECTLY!!!!!!
Speaking of Aaron, please continue to lift him up in prayer asHe's really sick in the hospital with very high Oxygen Flow Rates and It really saddens me to hear this but I'm telling people as many people as I can to pray for Aaron, and I hope all that see this will stop for a Minuet and say a Prayer for Aaron and his family.
Thank you very much, and may God bless you and Keep you all safe. Remember!
ONLY HE, can Love you PERFECTLY!!!!!!
Wednesday, March 30, 2016
Bad Desat off the vent!
Well I was off the ventilator today and well I felt weak and my vision was blurry. Well I checked my Oxygen, and the printer went off and the alarm went off and I could not see the screen because of m vision, so I toar off the Printer paper, or rather CUT it off, and showed it to Mom. "DESAT 74%, DESAT 74%!!" Well It was obvious I was going to do one thing. "PUT ON THE VENT!!!" It might get to the point where if I'm off the vent, I will have to be on oxygen!" Things otherwise have been really well. I saw a friend today who came over to visit me, and well We told her about what I'd done to my Dad's hospital bed when he was in the hospital.
OK, It's a long story, but We'll start when Dad was in the hospital in Cardiac Stepdown.
So I was visiting him in FEB of 2013 and He wasn't in the bed, and was sitting up in the chair. Well as I was sitting in his comfortable bed, I'd grabbed the manual off of the foot of the bed and started reading it with my Iphone's reader. So after reading it, and understanding the whole entire thing, I got down and then put what I'd read into action. I got into external Menus, and got the bed into a flat position. After this had successfully been performed, I'd locked the bed in that position in a very unique way that well as You will read later, or listen later depending on if you read visually or use a text to speech reader like I do, but None of the nurses knew how to unlock the bed using the method I'd used. Well when I'd left I guess I forgot to place Dad's Bed back in the position that It was in prior to me coming. Well Poor Dad went to get in the bed and well It woudln't sit up the way thathe wanted it. He called the Nurses and well none of them knew what to do. All of their unlocking procedures FAILED as I'd locked the bed in a way that involved getting into deep Menus that Nobody knew even existed in that bed. LOL Ohhhhh, Poor Dad couldn't do a thing with that bed. Well They called Maintenance Department. THEY DID NOT KNOW HOW TO GET THE BED UNLOCKED. They called the Head of Maintenance, and they did not have a clue how to fix it. Finally they said, "We'll have to get you another bed, as we have no idea what's going on!" Dad liked the bed that he was in and did not want another bed. He finally said, "No, Let me call Johann, and see if he can fix what he did!" He called me on the way home when Mom was driving me home, and I instructed him with Maintenance there with him, how to get into the Menus, or as I'd call them Minuets, and how to UNLOCK the bed. Well, he got it unlocked, and needless to say went to bed. LOL. My friend and I were laughing, and I had a minor desat from laughing on the vent, but It was f funny back then and still is just as funny today as it was back then.
Well you've had your story for today. Thank you very much, and God Bless you.
Remember, ONLY HE, can love you Perfectly!!!!!
OK, It's a long story, but We'll start when Dad was in the hospital in Cardiac Stepdown.
So I was visiting him in FEB of 2013 and He wasn't in the bed, and was sitting up in the chair. Well as I was sitting in his comfortable bed, I'd grabbed the manual off of the foot of the bed and started reading it with my Iphone's reader. So after reading it, and understanding the whole entire thing, I got down and then put what I'd read into action. I got into external Menus, and got the bed into a flat position. After this had successfully been performed, I'd locked the bed in that position in a very unique way that well as You will read later, or listen later depending on if you read visually or use a text to speech reader like I do, but None of the nurses knew how to unlock the bed using the method I'd used. Well when I'd left I guess I forgot to place Dad's Bed back in the position that It was in prior to me coming. Well Poor Dad went to get in the bed and well It woudln't sit up the way thathe wanted it. He called the Nurses and well none of them knew what to do. All of their unlocking procedures FAILED as I'd locked the bed in a way that involved getting into deep Menus that Nobody knew even existed in that bed. LOL Ohhhhh, Poor Dad couldn't do a thing with that bed. Well They called Maintenance Department. THEY DID NOT KNOW HOW TO GET THE BED UNLOCKED. They called the Head of Maintenance, and they did not have a clue how to fix it. Finally they said, "We'll have to get you another bed, as we have no idea what's going on!" Dad liked the bed that he was in and did not want another bed. He finally said, "No, Let me call Johann, and see if he can fix what he did!" He called me on the way home when Mom was driving me home, and I instructed him with Maintenance there with him, how to get into the Menus, or as I'd call them Minuets, and how to UNLOCK the bed. Well, he got it unlocked, and needless to say went to bed. LOL. My friend and I were laughing, and I had a minor desat from laughing on the vent, but It was f funny back then and still is just as funny today as it was back then.
Well you've had your story for today. Thank you very much, and God Bless you.
Remember, ONLY HE, can love you Perfectly!!!!!
There's Not A Friend, Like The Lowly Jesus!
The Song begins like this. "There's Not A Friend, Like The Lowly Jesus. NO NOT ONE, NO NOT ONE! NONE ELSE, can Heal All Our Soul's Diseases. NO NOT ONE, NO NOT ONE! Jesus Knows All About Our struggles. He Will Guide Till The Day Is Done. There's Not A Friend Like the Lowly Jesus. NO NOT ONE, NO NOT ONE!!
Friends? I LOVE that song so much. I was just posting on facebook to Aaron's Mom some of the words to this song as a hope that It would help her get through this tough time whilst Aaron's in the hospital and It's my prayer, my DEEP PRAYER, that somehow, I can bring her some comfort. She did see my Minuet, and I believe she liked it. I hope and pray she shows it to Aaron. I really do.
Anyhow, I'm getting off topic.
The truth is, Our friend in Jesus, is the BEST FRIEND we could possibly have. He knows ALL of our diseases and our weaknesses, and he can and WILL help us overcome those. I know this, from Personnal Experience. He can do so many wonderful things, if we just ask him to, and then allow him to. Jesus is our friend who wants us to talk through life's journeys with him, and who wants us to hold onto his hand and allow him to guide everything we do, say, and think. He will give us such a profound blessing if we just say, "Jesus? I want to be your servant, and I want to be faithful to you, and to follow you for all of my days. When we're going through something profoundly sad or something profoundly wonderful, he can help us through both of these. You know, that night when Rebekah put my video on Aaron's Blog, the happiness I felt was so profound, was so strong, and something I can't even begin describe. I KNOW, that if I didn't have Jesus right there beside me holding my hand, I would have gotten so bezerk with happiness i would probably have not been able to hold back the loud scream of hapiness, but Jesus helped me to know what to do to keep myself calm whilst remaining happy. He helped me to know that when this feeling got so profound and I either wanted to scream, or pound the walls with joy, I should run to the keyboard and Play "Capriccio," over and over and over and over again. That piece which I clang to for dear ental Sanity was what kept me calm and kept me happy all the while not screaming or making a massive amount of noise from the profound amounts of joy that were literally gushing in tanks into my system. I went in there and I played that piece what must have been 40 or 50 times and I know even still today that It's what helped me from becoming a loud noise maker and possibly a disturbance not only in the house but maybe to anybody in houses nearby. I Thank God and Bachc for that piece, because It was what settled me down enough to even sleep that night. I cannot describe that feeling I had that night.
My BEST FRIEND JESUS helped me know what to do in that situation and since then, He's becme even more of my friend and I want to tell others of the lowly Jesus and how He truly can help us with our struggles and our troubles. Withour aches and our pains. With our sorrows, and our Joys. With happiness that pours out in tanks and makes us want to SCREAM. He can help us keep that sanity.
Friends? Cling to that rock. That solid rock that is "Jesus christ!" Cling to Jesus's hand and Let him be your BEST FRIEND, Because HE WILL BE YOUR BEST FRIEND.
Thank you, and God Bless.
Remember, ONLY HE, can Love You Perfectly!!
Friends? I LOVE that song so much. I was just posting on facebook to Aaron's Mom some of the words to this song as a hope that It would help her get through this tough time whilst Aaron's in the hospital and It's my prayer, my DEEP PRAYER, that somehow, I can bring her some comfort. She did see my Minuet, and I believe she liked it. I hope and pray she shows it to Aaron. I really do.
Anyhow, I'm getting off topic.
The truth is, Our friend in Jesus, is the BEST FRIEND we could possibly have. He knows ALL of our diseases and our weaknesses, and he can and WILL help us overcome those. I know this, from Personnal Experience. He can do so many wonderful things, if we just ask him to, and then allow him to. Jesus is our friend who wants us to talk through life's journeys with him, and who wants us to hold onto his hand and allow him to guide everything we do, say, and think. He will give us such a profound blessing if we just say, "Jesus? I want to be your servant, and I want to be faithful to you, and to follow you for all of my days. When we're going through something profoundly sad or something profoundly wonderful, he can help us through both of these. You know, that night when Rebekah put my video on Aaron's Blog, the happiness I felt was so profound, was so strong, and something I can't even begin describe. I KNOW, that if I didn't have Jesus right there beside me holding my hand, I would have gotten so bezerk with happiness i would probably have not been able to hold back the loud scream of hapiness, but Jesus helped me to know what to do to keep myself calm whilst remaining happy. He helped me to know that when this feeling got so profound and I either wanted to scream, or pound the walls with joy, I should run to the keyboard and Play "Capriccio," over and over and over and over again. That piece which I clang to for dear ental Sanity was what kept me calm and kept me happy all the while not screaming or making a massive amount of noise from the profound amounts of joy that were literally gushing in tanks into my system. I went in there and I played that piece what must have been 40 or 50 times and I know even still today that It's what helped me from becoming a loud noise maker and possibly a disturbance not only in the house but maybe to anybody in houses nearby. I Thank God and Bachc for that piece, because It was what settled me down enough to even sleep that night. I cannot describe that feeling I had that night.
My BEST FRIEND JESUS helped me know what to do in that situation and since then, He's becme even more of my friend and I want to tell others of the lowly Jesus and how He truly can help us with our struggles and our troubles. Withour aches and our pains. With our sorrows, and our Joys. With happiness that pours out in tanks and makes us want to SCREAM. He can help us keep that sanity.
Friends? Cling to that rock. That solid rock that is "Jesus christ!" Cling to Jesus's hand and Let him be your BEST FRIEND, Because HE WILL BE YOUR BEST FRIEND.
Thank you, and God Bless.
Remember, ONLY HE, can Love You Perfectly!!
Tuesday, March 29, 2016
Another Minuet, This Time in D Major!
Well, here in my room on my ventilator, I've composed another Minuet in D Major. It's a slow Minuet that I believe I am going to call this Minuet the "Mobile Minuet!"
WHY?
You might be wondering, "Why such a weird name for a Minuet?"
Well, because This is just the piece for a Mobile.
It's a rather slow Minuet and I think if It were to be placed onto a musical Mobile, It'd sound PERFECT!
This Minuet is something I've worked on for a few days now, and Now It's coming along well.
Too bad I don't have a real harpsichord like Bach did, but hey, I have a piano, which will do, however if something were to happen, and I were to be offered a harpsichord, I would VERY VERY QUICKLY, and THANKFULLY TAKE THAT OFFER!!
Man, That'd be SWWEEEEEEEEEEEEETTT!!
I would love that.
This Minuet would sound awesome on a harpsichord I think too.
Well, Further updates will be posted on the Minuet, but I've pretty much Gotten It Composed and now just need to smooth it out.
Thank you all and God Bless.
REMEMBER, ONLY HE, can love you PERFECTLY!!!!
WHY?
You might be wondering, "Why such a weird name for a Minuet?"
Well, because This is just the piece for a Mobile.
It's a rather slow Minuet and I think if It were to be placed onto a musical Mobile, It'd sound PERFECT!
This Minuet is something I've worked on for a few days now, and Now It's coming along well.
Too bad I don't have a real harpsichord like Bach did, but hey, I have a piano, which will do, however if something were to happen, and I were to be offered a harpsichord, I would VERY VERY QUICKLY, and THANKFULLY TAKE THAT OFFER!!
Man, That'd be SWWEEEEEEEEEEEEETTT!!
I would love that.
This Minuet would sound awesome on a harpsichord I think too.
Well, Further updates will be posted on the Minuet, but I've pretty much Gotten It Composed and now just need to smooth it out.
Thank you all and God Bless.
REMEMBER, ONLY HE, can love you PERFECTLY!!!!
Things I do with my ventilator that you might Unconventional!
As the user of an LTV ventilator, I do some pretty unconventional things with it that really help me with both humidification, AND with airway clearance. Now, I want to begin by the insertion of a DISCLAIMER!!
DISCLAIMER: This info is personally what I do for myself. It is not, being used to administer medical advice, and should not be taken as such. If you have questions about your own Techniques I strongly advise you to talk to your Medical Dr. And/Or your DME provicer. What I'm stating below is what I do and works for me, however what i do, is not sutable for Everybody, as variables are different from patient to patient. NO TWO PATIENTS ARE THE SAME. Thank you, and God Bless.
So first we'll talk about the T-Piece simulator, or the TPS!
Some of you might know what a T-Piece is, some of you might not, but to explain it thoroughly, I need to first explain to you the Trach collar as many of you trach patients, or caregivers/parents/loved ones, of a trach patient probably know what this device is.
If you or somebody you know had ever been connected to a loud compressor who's drone may also be combined with a heating up of the room from this machine which in my case Is a plus, and you noticed a blue or clear hose coming from a bottle to possibly a drainage bag or some other device that drains excesscondensation, which also connects to another tube that might be clear or blue, and that goes to a clear ish device that strapped around your or the other person's neck where the trach tube is located, chances are, this is a trach collar, and what it is doing is providing cooled or warmed gases depending on the absence or presence of a heated humidifier, to the patient's trach to keep their trach moist. The presence of a trach tube means that if it is not capped well the patient is breathing air into the trach which bypasses the humidification aspect of your nose and mouth, and so this air will be dry and could and most likely will make secretions thicker. This increases the risk of plugging, and discomfort to the patient. So to prevent this, you might be placed on a trach collar, or a T-Piece. The Trach collar, sometimes also known as the Trach Mask or Trach Shield is there to keep moisture in the airways, and to prevent plugging, and discomfort. In the hospital, the drone of the compressor will most likely be replaced by the hissing of an oxygen or air supply, because most likely the wall supply will be used as the gas source for the patient's humidification. This means that there really is not the need for the compressor if you have a wall oxxygen and/or medical air supply. So Now that we've discussed the trach collar, Let's discuss a T-Piece which is what I preferred for my humidification when I was in the hospital, and what I still would rather have.
The T-Piece is shaped like a T, and connects to the blue/clear tubing that would usually connect to the trach collar, or another typeof mask. This is connected directly to the tracheostomy tube, and also allows for In-Line Suction systems to be placed so that suctioning does not have to be an open system. The T-Piece does exactly what the trach collar does which is humidifies the airways. So now that we've discussed the trach collar, and the T-Piece Let's discuss what I mean by T-Piece Simulator.
OK, In the short bursts of time I get off my vent when I'm not receiving breaths, I can turn the breath rate off by setting it to dashes, and then set a very small level of pressure Support above the PEEP so that I'm just getting enough Gas Flow to humidify my airways. This is what I call the T-Piece Simulator, or the TPS. I'd actually asked my DME for a T-Piece but well the RT did not even understand what I was talking about, so I got the standart old Trach collar. That thing gets so annoying to me and actually hurts my neck sometimes, so using the T-Piece simulator not only Humidifies my airways, but in the instance i forget to breathe, as I Often do, the ventilator will go into APNEA VENTILATION and will alarm. So this is what getting off the vent means for me usually. It's much more comfortable than my Trach Collar, and I can hear my music better without the Drone of the compressor that gets in the way of the music I listen to sometimes. It's so much more pleasant because I don't get moisture around my trach which can increase the risk of break down.
MY SIMULATED IPV:
All right, now this is rather complicated for people who may not be ventilator users or may not understand the vent very much, however I will explain to you what IPV is first and then how I do it since My DME doesn't even have IPV machines.
OK, So WHAT IS IPV? This is short for Intrapulmonary Percussive Ventilation. It's a device that delivers 100-300 breaths per minute of nebulized medication to help loosen up secretions, and can also be used to administer nebulized Saline Solution. Well, what I do with my ventilator may not reach up to 100 much less 300 Breaths Per Minute, however it is as good as it's going to get. It's not like I have my own Oscillator, but if I did WOOOOOH, that would be AWESOMELY AWESOME!! OK, so what i do is place my Nebulizer in Line with my Ventilator Circuit and then I actually Place my vent into Pressure Control, and after setting the Inspiratory Time to 0.3 Seconds, I max out the Respiratory Rate on the ventilator at 80 breaths Per Minute.
This is one minus about the LTV, and that is it does not go up to 100 like ventilators such as the Drager Evita XL, does, but Hey, It goes up to 80 which is better than what I have heard the Trilogy does which is 60!
NOTE: I AM SO THANKFUL, that I did not get a Trilogy. Thank you Dear Lord!!
Anyhow, once I do this, I increase the PEEP and the Inspiratory Pressures to get MAPs around 30 and 35cmH2O whilst the Nebulizer is administering the Nebulized medication.
This is not very comfortable, because as I've said In a previous blog post a while back, I am very very comfortable at the High range of what my Ventilator can provice for me.
Once my Nebulizer treatment has finished, I suction, and then I go back to the conventional ventilator settings which are still rather high, but not the IPV like settings.
I also perform some recruitment Maneuvers as well, but I'm not going to go into detail about those.
These procedures that I have listed are very carefully performed and are VERY comfortable.
When I'm at home I'm on the vent essentially all the time, however when I'm off It's usually with the TPS.
Thank you so much for listening or reading this blog Post, and May God bless you, and Keep you and your family, as well as all of your friends.
Remember, ONLY HE, can Love you PERFECTLY!!
DISCLAIMER: This info is personally what I do for myself. It is not, being used to administer medical advice, and should not be taken as such. If you have questions about your own Techniques I strongly advise you to talk to your Medical Dr. And/Or your DME provicer. What I'm stating below is what I do and works for me, however what i do, is not sutable for Everybody, as variables are different from patient to patient. NO TWO PATIENTS ARE THE SAME. Thank you, and God Bless.
So first we'll talk about the T-Piece simulator, or the TPS!
Some of you might know what a T-Piece is, some of you might not, but to explain it thoroughly, I need to first explain to you the Trach collar as many of you trach patients, or caregivers/parents/loved ones, of a trach patient probably know what this device is.
If you or somebody you know had ever been connected to a loud compressor who's drone may also be combined with a heating up of the room from this machine which in my case Is a plus, and you noticed a blue or clear hose coming from a bottle to possibly a drainage bag or some other device that drains excesscondensation, which also connects to another tube that might be clear or blue, and that goes to a clear ish device that strapped around your or the other person's neck where the trach tube is located, chances are, this is a trach collar, and what it is doing is providing cooled or warmed gases depending on the absence or presence of a heated humidifier, to the patient's trach to keep their trach moist. The presence of a trach tube means that if it is not capped well the patient is breathing air into the trach which bypasses the humidification aspect of your nose and mouth, and so this air will be dry and could and most likely will make secretions thicker. This increases the risk of plugging, and discomfort to the patient. So to prevent this, you might be placed on a trach collar, or a T-Piece. The Trach collar, sometimes also known as the Trach Mask or Trach Shield is there to keep moisture in the airways, and to prevent plugging, and discomfort. In the hospital, the drone of the compressor will most likely be replaced by the hissing of an oxygen or air supply, because most likely the wall supply will be used as the gas source for the patient's humidification. This means that there really is not the need for the compressor if you have a wall oxxygen and/or medical air supply. So Now that we've discussed the trach collar, Let's discuss a T-Piece which is what I preferred for my humidification when I was in the hospital, and what I still would rather have.
The T-Piece is shaped like a T, and connects to the blue/clear tubing that would usually connect to the trach collar, or another typeof mask. This is connected directly to the tracheostomy tube, and also allows for In-Line Suction systems to be placed so that suctioning does not have to be an open system. The T-Piece does exactly what the trach collar does which is humidifies the airways. So now that we've discussed the trach collar, and the T-Piece Let's discuss what I mean by T-Piece Simulator.
OK, In the short bursts of time I get off my vent when I'm not receiving breaths, I can turn the breath rate off by setting it to dashes, and then set a very small level of pressure Support above the PEEP so that I'm just getting enough Gas Flow to humidify my airways. This is what I call the T-Piece Simulator, or the TPS. I'd actually asked my DME for a T-Piece but well the RT did not even understand what I was talking about, so I got the standart old Trach collar. That thing gets so annoying to me and actually hurts my neck sometimes, so using the T-Piece simulator not only Humidifies my airways, but in the instance i forget to breathe, as I Often do, the ventilator will go into APNEA VENTILATION and will alarm. So this is what getting off the vent means for me usually. It's much more comfortable than my Trach Collar, and I can hear my music better without the Drone of the compressor that gets in the way of the music I listen to sometimes. It's so much more pleasant because I don't get moisture around my trach which can increase the risk of break down.
MY SIMULATED IPV:
All right, now this is rather complicated for people who may not be ventilator users or may not understand the vent very much, however I will explain to you what IPV is first and then how I do it since My DME doesn't even have IPV machines.
OK, So WHAT IS IPV? This is short for Intrapulmonary Percussive Ventilation. It's a device that delivers 100-300 breaths per minute of nebulized medication to help loosen up secretions, and can also be used to administer nebulized Saline Solution. Well, what I do with my ventilator may not reach up to 100 much less 300 Breaths Per Minute, however it is as good as it's going to get. It's not like I have my own Oscillator, but if I did WOOOOOH, that would be AWESOMELY AWESOME!! OK, so what i do is place my Nebulizer in Line with my Ventilator Circuit and then I actually Place my vent into Pressure Control, and after setting the Inspiratory Time to 0.3 Seconds, I max out the Respiratory Rate on the ventilator at 80 breaths Per Minute.
This is one minus about the LTV, and that is it does not go up to 100 like ventilators such as the Drager Evita XL, does, but Hey, It goes up to 80 which is better than what I have heard the Trilogy does which is 60!
NOTE: I AM SO THANKFUL, that I did not get a Trilogy. Thank you Dear Lord!!
Anyhow, once I do this, I increase the PEEP and the Inspiratory Pressures to get MAPs around 30 and 35cmH2O whilst the Nebulizer is administering the Nebulized medication.
This is not very comfortable, because as I've said In a previous blog post a while back, I am very very comfortable at the High range of what my Ventilator can provice for me.
Once my Nebulizer treatment has finished, I suction, and then I go back to the conventional ventilator settings which are still rather high, but not the IPV like settings.
I also perform some recruitment Maneuvers as well, but I'm not going to go into detail about those.
These procedures that I have listed are very carefully performed and are VERY comfortable.
When I'm at home I'm on the vent essentially all the time, however when I'm off It's usually with the TPS.
Thank you so much for listening or reading this blog Post, and May God bless you, and Keep you and your family, as well as all of your friends.
Remember, ONLY HE, can Love you PERFECTLY!!
Monday, March 28, 2016
A VERY important message for Ventilator patients!
Hello. How are you? Well I'm doing pretty good. for the last two nights in a role I've ended up with water in my lungs that is a result of the Condensation build up in my ventilator circuit. I have a drain on the exhalation side of the circuit, and it gets completely full pretty quickly but I think I'm moving around in my sleep or something because it seems that water from the inspiratory side gets blown into my lungs which I'm going to add right now is VERY VERY uncomfortable. OK, this is a VERY VERY IMPORTANT WARNING, from a ventilator user to all ventilator users or soon to be ventilator users. It is VERY serious and I have a feeling you will thank me if you have to see both sides of the DME system, being those that give you a Non-Heated Wire Humidifier system and a Heated wire System, you'll learn that a Heated Wire is A MUST for all ventilator users that use humidifiers, and I think ALL SHOULD BE using humidifiers. I've seen videos where the HME is the primary means for humidification. I don't like this, and I wouldn't be able to tolerate it. I'm just barely tolerating what I have to deal with which is a Non-Heated Wire System, and trust me, if you have to deal with this system especially on LTV circuits you will certainly realize how much better it is to have a heated wire circuit.
OK, so Let's begin with the basic system which is a Non-Heated Wire Circuit with heated Humidification.
OK, We'll use our patient who I've decided will be an infant.
Pediatric home ventilation has become a MAJOR thing now days with vents like the LTVs and the Trilogy vents, but in this example, we will be using the LTv throughout because It's what I've had experience with, and the only vent I'll use if I can help it, because of the ICU ventilator Nature of the LTV vents which is the kind of ventilation that I need! This means that If I'm ever given an Option of a Trilogy, I'm going to have TWO words! "ABSOLUTELY NOT!"
I'm staying with my LTV unless somebody offers me an Evita XL then I'm leaping for that, but Not a Trilogy and CERTAINLY not anything old like the LP10s! Although I think those things are going out and they'll become like the MA-1 vents and that means OUT OUT OUT! LOL
OK.
Case: We have Aiden who is a 10 month old with Trisomy 18 who is on ventilation essentially 24/7 with some short periods off the vent but when He's off the vent he requires Higher Oxygen concentrations, and these periods off of the vent may last from anywhere around 10-15 minutes at THE MOST.
OK, so Now Aiden has a humidified circuit WITHOUT a Heated Wire. What does this mean?
Air and oxygen go from the ventilator to a short tube to the Humidifier where It picks up heat but then as It's going through the Inspiratory sids of the circuit the surface areaof the circuit is cooler than the temp in the chamber and guess what. It loses that condensation and water collects in the tubing! This means that Aiden'sMom and Dad have to get up every so often and empty the water out of the circuit. Well for the first several months after a couple of nights with a circuit, we get a really really ridiculous and annoying problem.
BEEP BEEP BEEP!! Aiden's Mom gets up at 01:00 and what do ya know? The DISC/SENSE alarm is going off. Usually that means a sense line which is one of the trandsucers has become disconnected, or blocked by something. Aiden was sleeping so well at the vent's set rate of 35 breaths Per Minute and Now he's awake and anxious. The vent is Autocycling! Great, and the tubing is rattling because of the water that is moving in the tubing. It's like sort of a water hose and It's only a matter of time before Aiden gets a very unpleasant spray of water, WHERE? IN HIS LUNGS!!! NOT GOOD!!! So Now She takes Aiden off the vent hoping to empty the water from the circuit into a bucket she's already got just for this purpose! Aiden is off the vent for a short period of time whilst she does that and well she puts the vent back on and Aiden starts getting really upset because even though the Disc/Sense alarm has stopped for what will be a few seconds now when he inhails, the vent's Exhalation seems to be stuck or something is weird because He's not getting a breath and the low Pressure Alarm is going off. Maybe even the Low PEEP alarm if that is turned on and It should be turned on! Aiden's Mom notices that there's no Pressure Increase when Aiden Breathe as there should be because of the 16 of Pressure Support that's set above the 10 of PEEP giving a total PIP of 26cmH2O when he breathes in. Now there's a problem. she takes Aiden off the ventilator again, and calls for her Husband to bag him whilst she's troubleshooting the thing. She feels throughout the circuit and UH OH, there's water literally draining out the Exhalation valve and It is soaking the sheets. She shakes the valve whilst Sean her Husband bags Aiden with 10 L/Min of flow from the Oxygen Concentrator, as Now Aiden's Pulse Oximeter is going off because He's getting upset and now getting the air and oxygen that he needs.
Sean gets Aiden's Oxygen sat up whilst His Mom shakes out the valve and thenthey put the vent back on him!
OK, they watch the vent for a few minutes and then go back to bed. No sooner than 30 Minuets later, BEEP BEEP BEEP!!!!" Aiden's Mom had just gotten back to sleep when this thing happens again. She goes in hoping that he just needs to be suctioned and that It's not another round with "DISC/SENSE!!" And as she enters the room, Guess what. The red LED display above the settings displays reads "DISC/SENSE!" "OH GREAT, Really," His Mother says silently! She looks at the exhalation valve which is soaking the sheets again. Aiden requires the Highest level on the Humidifier setting so the knob is maxed out.
NOTE: This is My situation, because anything lower and I get bloody secretions and a very high amount of Plugging going on!" NOT FUN!!
So Aiden's Mother shakes the valve and then decides to tap it some to get what she can out of the valve but then there's another problem!! Now when she tapped it the valve is making a vibrating sound and Aiden is getting really upset again. "UH OH," she has just dislodged the diaphragm in the exhalation valve. Now she cold try putting something in the valve to push it back in place but It takes great skill for that and It's not a job for somebody half asleep. Now the vent is reading Low PEEP because the exhalation valve which is now out of place is giving Aiden a PEEP of 2cmH2O instead of the 10cmH2O that he needed! NOT A GOOD THING. So NOW the LTV 1150 with It's Internal PEEP cannot possibly set the correct PEEP level with the valve out of place. Her Husband comes into the room to Bag Aiden who's really getting upset now and who's sats are soon to start Literally TANKING if they don't get his breathing back to a normal pattern. Aiden desats very easily. So now he is being bagged on the oxygen concentrator with the PEEP valve set at 10cmH2O and then after that she tries to tap the valve back into place, with a small test lung being the simulated lung. Well NO JOY there. After 20 Minutes She says to her Husband, "I just put this circuit on a couple of days ago, but It looks like we've gotta change the thing, and I'm calling them in the morning to tell them we waqnt a set up like In the Hospital.
In the Hospital, Aiden was on an Evita XL ventilator with a Fisher & Paykel MR850 Humidifier and then when they transitioned him to the LTV 1150 they utilized their heated wire LTV circuits with the MR850 and had NO PROBLEMS!! Now that they are finally home after 10 Months In the Hospital because of Aiden's continuous drift into stability and instability, they were given a Fisher and Paykel HC150 Humidifier which is Not really sutable for any ventilator, because It's more for PAP therapy,
She changes the circuit and things stabilize for the rest of the night with occasional awakenings to empty the circuit when condensation flooded it. A few hours after daylight when the DME opens, Aiden's Mom calls the DME and explains the issues and they say, "O, We do not have heated wires!" So now for one more night Aiden's parents sleep well with only occasional periods of having to get up and empty the water out of the circuit, but then the DISC/SENSE alarm starts again and the process begins requiring another groggy circuit change. Finally she decides to try something. Aiden happens to have a trach collar setup available in the event that he does get off the vent for a few minutes and shoe grabs a long tube from the closet that would usually go to the trach collar set up and cconnects that to the exhalation side of the ventilator circuit where the exhalation valve's section of tubing would go. She then connects an extra Humidifier chamber with the Number for this chamber being 325 and then she conects the small section of tubing to the other sideof the chamber where the exhalation valve will connect to, and after that, she pushes the exhalation valve section of tubing onto a hook on the ventilator's stand so that It will be upright. So now, water will drain into that home made water trap, well, unless Aiden turns a certain way or the water collects in very profound amounts in the inhalation valve. So that night Aiden's Parents occasionally go in to hold up the exhalation side of the circuit or the inhalation side of the circuit and let them drain into the water chambers, but then at 03:00 during the wee hours, Suddenly Aiden's Mother as awakened by what sounds like Aiden moving around and coughing and the ventilator alarm starts going off as well as the pulse ox. Now when she goes in there Aiden is very upset and is coughing whilst the High Pressure Alarm is going off. UH OH, Aiden has just gotten a shower, only it was IN HIS LUNGS!! She takes the vent off and suctions Aiden. She's not sure what's actually going on but then she hears a rattling noise in his chest and when she takes the vent circuit off the vent sprays her with water. Now we've got a vent circuit that's now a water hose, and even though some of it is draining into the humidifier chamber that is being used as a water trap, the water in the inspiratory limb is not being drained. she could put a trap on the inspiratory limb, however that could decrease the pressure that is inside of the circuit, and cause further problems!
OK, so Now we've seen that a heated but Non Heated Wire Circuit is not a pretty sight, and is VERY unpleasant with it's condensation and the issues that are mainly related to the water that gets left in the tubing! Now let's visit the Heated Wire circuit!
So Now Aiden's Mother finally realized that it was not working out well with Aiden and he didn't get Pneumonia from that eisode but he certainly isn't so comfortable and relaxed on his vent like he was, and will often try to pull it off. She realized that with his high humidification requirements He needed a heated wire circuit and that was just it! She decided that she was going to have to get another DME provicer, and so she found another ne with a heated wire system. Now Aiden was given a Fisher & Paykel MR850 Heated Humidifier, and from there on out it was smooth.
What is different about this Humidifier vs the Other kind that do not have heated wired? Well to start the heated wires are there to prevent or at least reduce condensation. With these systems there is a heater probe at the humidifier chamber and at Aiden's End. there is a heating wire that runs along the ventilator's circuit and what this will do is it will heat the tubing up according to readings generated by the probe at Aiden's end that tell the heater what the temperature is inside of the circuit. So now there is a much smoother air flow through the ventilator circuit and on the Humidifier if you look in the front on the display screen you will see that the display should read at or near 37 degrees C and so the water and the air temperature are continuously monitored and the temperature is closely regulated so that Aiden gets at or around 37 degrees C and so that His airways are not so dry and he does not get a lung full of Water.
I feel that ALL DMEs should be required to have the heated wire circuits if they're offering home ventilator care, because otherwise you're in for a rough ride if you have the high humidification requirements like Aiden and I do. I try to turn my heater's knob down but even a slight bit and I'll get more plugging episodes and it is MUCH more uncomfortable, so mine is at the max setting and it looks like that's how it will stay unless I get a Heated Wire or unless somehow I'm allowed to heat my room up to over 100 degrees, but then Momand Dad would not agree with that and even though I'd be perfectly fine at that temp anybody else who came in would start coughing and gasping for air.
LOL!
I remember several years ago when my nephew came into my room, and I'd had my heater maxed out, and my room was well over 90 degrees. I was comfortable, but he started coughing andgasping and RAN OUT! It still makes me laugh to this day.
But I don't want to get off subject here. The Point is, YOU NEED a Heated wire Humidifier if you have that option because It is what will give you the best humidification.
So, if you get that option, between a Heated wire and Non-Heated wire circuit setup, I'm telling you that YOU REALLY NEED to take that heated wire circuit setup and PLEASE, stay away from humidifiers like the HC150 because well their chambers don't have a spike and a gravity infused water system and you not only have to refill them, but they are a pain when the knob gets moved accidentally, because the knobs are so loose and even picking the thing up or moving it or just turning it will cause the knob to move, so you have to check the knobs quiteoften.
Thank you for reading another blog post, and may God Bless you and Keep you.
Remember, ONLY HE, can love you PERFECTLY!!
OK, so Let's begin with the basic system which is a Non-Heated Wire Circuit with heated Humidification.
OK, We'll use our patient who I've decided will be an infant.
Pediatric home ventilation has become a MAJOR thing now days with vents like the LTVs and the Trilogy vents, but in this example, we will be using the LTv throughout because It's what I've had experience with, and the only vent I'll use if I can help it, because of the ICU ventilator Nature of the LTV vents which is the kind of ventilation that I need! This means that If I'm ever given an Option of a Trilogy, I'm going to have TWO words! "ABSOLUTELY NOT!"
I'm staying with my LTV unless somebody offers me an Evita XL then I'm leaping for that, but Not a Trilogy and CERTAINLY not anything old like the LP10s! Although I think those things are going out and they'll become like the MA-1 vents and that means OUT OUT OUT! LOL
OK.
Case: We have Aiden who is a 10 month old with Trisomy 18 who is on ventilation essentially 24/7 with some short periods off the vent but when He's off the vent he requires Higher Oxygen concentrations, and these periods off of the vent may last from anywhere around 10-15 minutes at THE MOST.
OK, so Now Aiden has a humidified circuit WITHOUT a Heated Wire. What does this mean?
Air and oxygen go from the ventilator to a short tube to the Humidifier where It picks up heat but then as It's going through the Inspiratory sids of the circuit the surface areaof the circuit is cooler than the temp in the chamber and guess what. It loses that condensation and water collects in the tubing! This means that Aiden'sMom and Dad have to get up every so often and empty the water out of the circuit. Well for the first several months after a couple of nights with a circuit, we get a really really ridiculous and annoying problem.
BEEP BEEP BEEP!! Aiden's Mom gets up at 01:00 and what do ya know? The DISC/SENSE alarm is going off. Usually that means a sense line which is one of the trandsucers has become disconnected, or blocked by something. Aiden was sleeping so well at the vent's set rate of 35 breaths Per Minute and Now he's awake and anxious. The vent is Autocycling! Great, and the tubing is rattling because of the water that is moving in the tubing. It's like sort of a water hose and It's only a matter of time before Aiden gets a very unpleasant spray of water, WHERE? IN HIS LUNGS!!! NOT GOOD!!! So Now She takes Aiden off the vent hoping to empty the water from the circuit into a bucket she's already got just for this purpose! Aiden is off the vent for a short period of time whilst she does that and well she puts the vent back on and Aiden starts getting really upset because even though the Disc/Sense alarm has stopped for what will be a few seconds now when he inhails, the vent's Exhalation seems to be stuck or something is weird because He's not getting a breath and the low Pressure Alarm is going off. Maybe even the Low PEEP alarm if that is turned on and It should be turned on! Aiden's Mom notices that there's no Pressure Increase when Aiden Breathe as there should be because of the 16 of Pressure Support that's set above the 10 of PEEP giving a total PIP of 26cmH2O when he breathes in. Now there's a problem. she takes Aiden off the ventilator again, and calls for her Husband to bag him whilst she's troubleshooting the thing. She feels throughout the circuit and UH OH, there's water literally draining out the Exhalation valve and It is soaking the sheets. She shakes the valve whilst Sean her Husband bags Aiden with 10 L/Min of flow from the Oxygen Concentrator, as Now Aiden's Pulse Oximeter is going off because He's getting upset and now getting the air and oxygen that he needs.
Sean gets Aiden's Oxygen sat up whilst His Mom shakes out the valve and thenthey put the vent back on him!
OK, they watch the vent for a few minutes and then go back to bed. No sooner than 30 Minuets later, BEEP BEEP BEEP!!!!" Aiden's Mom had just gotten back to sleep when this thing happens again. She goes in hoping that he just needs to be suctioned and that It's not another round with "DISC/SENSE!!" And as she enters the room, Guess what. The red LED display above the settings displays reads "DISC/SENSE!" "OH GREAT, Really," His Mother says silently! She looks at the exhalation valve which is soaking the sheets again. Aiden requires the Highest level on the Humidifier setting so the knob is maxed out.
NOTE: This is My situation, because anything lower and I get bloody secretions and a very high amount of Plugging going on!" NOT FUN!!
So Aiden's Mother shakes the valve and then decides to tap it some to get what she can out of the valve but then there's another problem!! Now when she tapped it the valve is making a vibrating sound and Aiden is getting really upset again. "UH OH," she has just dislodged the diaphragm in the exhalation valve. Now she cold try putting something in the valve to push it back in place but It takes great skill for that and It's not a job for somebody half asleep. Now the vent is reading Low PEEP because the exhalation valve which is now out of place is giving Aiden a PEEP of 2cmH2O instead of the 10cmH2O that he needed! NOT A GOOD THING. So NOW the LTV 1150 with It's Internal PEEP cannot possibly set the correct PEEP level with the valve out of place. Her Husband comes into the room to Bag Aiden who's really getting upset now and who's sats are soon to start Literally TANKING if they don't get his breathing back to a normal pattern. Aiden desats very easily. So now he is being bagged on the oxygen concentrator with the PEEP valve set at 10cmH2O and then after that she tries to tap the valve back into place, with a small test lung being the simulated lung. Well NO JOY there. After 20 Minutes She says to her Husband, "I just put this circuit on a couple of days ago, but It looks like we've gotta change the thing, and I'm calling them in the morning to tell them we waqnt a set up like In the Hospital.
In the Hospital, Aiden was on an Evita XL ventilator with a Fisher & Paykel MR850 Humidifier and then when they transitioned him to the LTV 1150 they utilized their heated wire LTV circuits with the MR850 and had NO PROBLEMS!! Now that they are finally home after 10 Months In the Hospital because of Aiden's continuous drift into stability and instability, they were given a Fisher and Paykel HC150 Humidifier which is Not really sutable for any ventilator, because It's more for PAP therapy,
She changes the circuit and things stabilize for the rest of the night with occasional awakenings to empty the circuit when condensation flooded it. A few hours after daylight when the DME opens, Aiden's Mom calls the DME and explains the issues and they say, "O, We do not have heated wires!" So now for one more night Aiden's parents sleep well with only occasional periods of having to get up and empty the water out of the circuit, but then the DISC/SENSE alarm starts again and the process begins requiring another groggy circuit change. Finally she decides to try something. Aiden happens to have a trach collar setup available in the event that he does get off the vent for a few minutes and shoe grabs a long tube from the closet that would usually go to the trach collar set up and cconnects that to the exhalation side of the ventilator circuit where the exhalation valve's section of tubing would go. She then connects an extra Humidifier chamber with the Number for this chamber being 325 and then she conects the small section of tubing to the other sideof the chamber where the exhalation valve will connect to, and after that, she pushes the exhalation valve section of tubing onto a hook on the ventilator's stand so that It will be upright. So now, water will drain into that home made water trap, well, unless Aiden turns a certain way or the water collects in very profound amounts in the inhalation valve. So that night Aiden's Parents occasionally go in to hold up the exhalation side of the circuit or the inhalation side of the circuit and let them drain into the water chambers, but then at 03:00 during the wee hours, Suddenly Aiden's Mother as awakened by what sounds like Aiden moving around and coughing and the ventilator alarm starts going off as well as the pulse ox. Now when she goes in there Aiden is very upset and is coughing whilst the High Pressure Alarm is going off. UH OH, Aiden has just gotten a shower, only it was IN HIS LUNGS!! She takes the vent off and suctions Aiden. She's not sure what's actually going on but then she hears a rattling noise in his chest and when she takes the vent circuit off the vent sprays her with water. Now we've got a vent circuit that's now a water hose, and even though some of it is draining into the humidifier chamber that is being used as a water trap, the water in the inspiratory limb is not being drained. she could put a trap on the inspiratory limb, however that could decrease the pressure that is inside of the circuit, and cause further problems!
OK, so Now we've seen that a heated but Non Heated Wire Circuit is not a pretty sight, and is VERY unpleasant with it's condensation and the issues that are mainly related to the water that gets left in the tubing! Now let's visit the Heated Wire circuit!
So Now Aiden's Mother finally realized that it was not working out well with Aiden and he didn't get Pneumonia from that eisode but he certainly isn't so comfortable and relaxed on his vent like he was, and will often try to pull it off. She realized that with his high humidification requirements He needed a heated wire circuit and that was just it! She decided that she was going to have to get another DME provicer, and so she found another ne with a heated wire system. Now Aiden was given a Fisher & Paykel MR850 Heated Humidifier, and from there on out it was smooth.
What is different about this Humidifier vs the Other kind that do not have heated wired? Well to start the heated wires are there to prevent or at least reduce condensation. With these systems there is a heater probe at the humidifier chamber and at Aiden's End. there is a heating wire that runs along the ventilator's circuit and what this will do is it will heat the tubing up according to readings generated by the probe at Aiden's end that tell the heater what the temperature is inside of the circuit. So now there is a much smoother air flow through the ventilator circuit and on the Humidifier if you look in the front on the display screen you will see that the display should read at or near 37 degrees C and so the water and the air temperature are continuously monitored and the temperature is closely regulated so that Aiden gets at or around 37 degrees C and so that His airways are not so dry and he does not get a lung full of Water.
I feel that ALL DMEs should be required to have the heated wire circuits if they're offering home ventilator care, because otherwise you're in for a rough ride if you have the high humidification requirements like Aiden and I do. I try to turn my heater's knob down but even a slight bit and I'll get more plugging episodes and it is MUCH more uncomfortable, so mine is at the max setting and it looks like that's how it will stay unless I get a Heated Wire or unless somehow I'm allowed to heat my room up to over 100 degrees, but then Momand Dad would not agree with that and even though I'd be perfectly fine at that temp anybody else who came in would start coughing and gasping for air.
LOL!
I remember several years ago when my nephew came into my room, and I'd had my heater maxed out, and my room was well over 90 degrees. I was comfortable, but he started coughing andgasping and RAN OUT! It still makes me laugh to this day.
But I don't want to get off subject here. The Point is, YOU NEED a Heated wire Humidifier if you have that option because It is what will give you the best humidification.
So, if you get that option, between a Heated wire and Non-Heated wire circuit setup, I'm telling you that YOU REALLY NEED to take that heated wire circuit setup and PLEASE, stay away from humidifiers like the HC150 because well their chambers don't have a spike and a gravity infused water system and you not only have to refill them, but they are a pain when the knob gets moved accidentally, because the knobs are so loose and even picking the thing up or moving it or just turning it will cause the knob to move, so you have to check the knobs quiteoften.
Thank you for reading another blog post, and may God Bless you and Keep you.
Remember, ONLY HE, can love you PERFECTLY!!
Sunday, March 27, 2016
Prayer request PLEASE!
Well I just read on Facebook that Aaron is in the Hospital with Rhino virus. Please remember him in your prayers. Please pray that the Lord will give Aaron comfort in the way that ONLY OUR LORD JESUS can. Please pray that the Lord will give the Drs. and other staff Wisdom in taking care of Aaron and that he will give comfort and encouraging words to this very special family.
Thank you so much, and God Bless you.
Remember, ONLY HE, can Love You PERFECTLY!!
Thank you so much, and God Bless you.
Remember, ONLY HE, can Love You PERFECTLY!!
Saturday, March 26, 2016
Most important rules for riding a motorcycle!!
Well, as you all know, or those who ride motorcycles or have ridden one in the past, there are certain rules for riding motorcycles obviously!!
Here are the two most important ones!!
1: WEAR A HELMET!! If you're going to set foot on a motorcycle, you had better wear your helmet, because otherwise, if things go wrong and often they do, You don't want to be decapitated or possibly even worse, end up a quad on a ventilator paralyzed or at least in a wheelchair because your Spinal cord was severed somewhere all because WHY? YOU WERE TOO STUPID TO WEAR YOUR HELMET!! Have fun on a motorcycle but to do this safely, you need a helmet on your head, otherwise stay off the thing!! Because if something goes wrong, usually your helmet will give you some protection!!
It's just like wearing your seatbelt in a cark. CLICK IT, or TICKET!!! I know some people are too stupid to do this, but if something goes wrong in a car if you're not wearing your seatbelt, you have a higher likelyhood of being projected out of the car. But that's rule Number ONE for riding a motorcycle!!
2: DO NOT, Play your Motorcycle like a HARPSICHORD!!
Well, whilst harpsichords are fun to play, and in fact have an addicting sound, and such a beautiful feeling goes through my body when I play one, a harpsichord is to be played like a harpsichord! DO NOT, and I will say it again, "DO NOT," play your motorcycle like it's a harpsichord. Why? Because a motorcycle is to be driven like a Motorcycle, and if you want to play something like a Harpsichord, well than I have just the answer for you!! PLAY A HARPSICHORD LIKE IT'S A HARPSICHORD, BECAUSE THAT IS WHAT IT IS, BUT A MOTORCYCLE ISN'T A HARPSICHORD, AND SHOULD NOT BE PLAYED LIKE IT IS ONE, ALTHOUGH PEOPLE LIKE ME MIGHT BE TEMPTED TO DO SO, because when I'm happy I play music, and if I were to be on a motorcycle right now with all of the blessings that I have received this year, a ride on a motorcycle would be another blessing added to the tanks of blessings, and so if I were confronted with a ride on a motorcycle as happy as I've been lately since she put my video that I did for Aaron months ago on his blog, well I could use a ride on something real fast and a motorcycle would do JUST THAT, so If I were confonted with a ride on a motorcycle, I'd be tempted to play it like a harpsichord, but I'd have to remember that THIS IS UNCALLED FOR, and could be VERY unhealthy for me. So What could happen if you play your motorcycle like It's a harpsichord?
Well Here is what COULD happen! You could get shot off the thing like It's a cannon shooting a cannonball, only in this case You would be the cannonball and You probably would not land in one piece, much less alive. Motorcycles sometimes seem to have a mind of their own when things go wrong, and so it might not like it if you were to start playing the MOTORCYCLE like It's a harpsichord! Now I know for people like me, this would be rather difficult to do, because in the event I was to come face to face with a motorcycle ride, ummmmm, I'd be beyond happy and would probably be screaming the Melody out to the fifth or sixth movements of "Capriccio, BWV 992," because those are fast motorcycle like movements and right now, I've kinda been tempted to do that at times when I think of how wonderful this year has been. When I think of things that've happened like my video being put on Aaron's blog well I really want to scream classical melodies out because of how happy these thoughts make me, but I try not to do that, but I might fail at avoiding that if I were on a motorcycle, but would have to try not to play it like a harpsichord. Yeah, since she put my video on her very own son's blog, thoughts around that event make me want to play harpsichords and get on motorcycles screaming classical melodies out, b because I'm very thankful that this year has had events like that. That was a very special event I will NEVER forget, because of how special it was and is not to me, and how special it will ALWAYS be.
So even when you've got a situation on your hands like I do, and You have very very profound blessings that have recently occured, and You know that more could occur very soon, You must remember if You get on a motorcycle, as hard as it might be to avoid, PLEASE avoid the droning temptation to Play a motorcycle like It's a harpsichord, because well I hate to say this, but a Motorcycle is NOT a harpsichord no matter how much you would like it to be one, well It's NOT, and should NOT be played like It is a harpsichord, because the motorcycle won't like that and will tell you in what could be VERY painful ways. LOL
Thank you for learning the rules about riding a motorcycle.
Fo9r all of you Motorcyclists out there, stay safe whilst driving, and if you want to scream the Melody to classical pieces whilst You're flying down the road on a motorcycle, do it, and do it LOUD, because It's something that we all might have to do, and I know there will come a situation where I have to do it because I just get so happy from the massive tanks of blessings that I've had come to past in my life. I know one day I'll end up having to literally scream some classical piece out with complete joy, and I have a feeling It's going to be arriving soon.
Thank you very much, may God bless you and Keep you, and Remember guys!
ONLY HE, can Love You PERFECTLY!!
Here are the two most important ones!!
1: WEAR A HELMET!! If you're going to set foot on a motorcycle, you had better wear your helmet, because otherwise, if things go wrong and often they do, You don't want to be decapitated or possibly even worse, end up a quad on a ventilator paralyzed or at least in a wheelchair because your Spinal cord was severed somewhere all because WHY? YOU WERE TOO STUPID TO WEAR YOUR HELMET!! Have fun on a motorcycle but to do this safely, you need a helmet on your head, otherwise stay off the thing!! Because if something goes wrong, usually your helmet will give you some protection!!
It's just like wearing your seatbelt in a cark. CLICK IT, or TICKET!!! I know some people are too stupid to do this, but if something goes wrong in a car if you're not wearing your seatbelt, you have a higher likelyhood of being projected out of the car. But that's rule Number ONE for riding a motorcycle!!
2: DO NOT, Play your Motorcycle like a HARPSICHORD!!
Well, whilst harpsichords are fun to play, and in fact have an addicting sound, and such a beautiful feeling goes through my body when I play one, a harpsichord is to be played like a harpsichord! DO NOT, and I will say it again, "DO NOT," play your motorcycle like it's a harpsichord. Why? Because a motorcycle is to be driven like a Motorcycle, and if you want to play something like a Harpsichord, well than I have just the answer for you!! PLAY A HARPSICHORD LIKE IT'S A HARPSICHORD, BECAUSE THAT IS WHAT IT IS, BUT A MOTORCYCLE ISN'T A HARPSICHORD, AND SHOULD NOT BE PLAYED LIKE IT IS ONE, ALTHOUGH PEOPLE LIKE ME MIGHT BE TEMPTED TO DO SO, because when I'm happy I play music, and if I were to be on a motorcycle right now with all of the blessings that I have received this year, a ride on a motorcycle would be another blessing added to the tanks of blessings, and so if I were confronted with a ride on a motorcycle as happy as I've been lately since she put my video that I did for Aaron months ago on his blog, well I could use a ride on something real fast and a motorcycle would do JUST THAT, so If I were confonted with a ride on a motorcycle, I'd be tempted to play it like a harpsichord, but I'd have to remember that THIS IS UNCALLED FOR, and could be VERY unhealthy for me. So What could happen if you play your motorcycle like It's a harpsichord?
Well Here is what COULD happen! You could get shot off the thing like It's a cannon shooting a cannonball, only in this case You would be the cannonball and You probably would not land in one piece, much less alive. Motorcycles sometimes seem to have a mind of their own when things go wrong, and so it might not like it if you were to start playing the MOTORCYCLE like It's a harpsichord! Now I know for people like me, this would be rather difficult to do, because in the event I was to come face to face with a motorcycle ride, ummmmm, I'd be beyond happy and would probably be screaming the Melody out to the fifth or sixth movements of "Capriccio, BWV 992," because those are fast motorcycle like movements and right now, I've kinda been tempted to do that at times when I think of how wonderful this year has been. When I think of things that've happened like my video being put on Aaron's blog well I really want to scream classical melodies out because of how happy these thoughts make me, but I try not to do that, but I might fail at avoiding that if I were on a motorcycle, but would have to try not to play it like a harpsichord. Yeah, since she put my video on her very own son's blog, thoughts around that event make me want to play harpsichords and get on motorcycles screaming classical melodies out, b because I'm very thankful that this year has had events like that. That was a very special event I will NEVER forget, because of how special it was and is not to me, and how special it will ALWAYS be.
So even when you've got a situation on your hands like I do, and You have very very profound blessings that have recently occured, and You know that more could occur very soon, You must remember if You get on a motorcycle, as hard as it might be to avoid, PLEASE avoid the droning temptation to Play a motorcycle like It's a harpsichord, because well I hate to say this, but a Motorcycle is NOT a harpsichord no matter how much you would like it to be one, well It's NOT, and should NOT be played like It is a harpsichord, because the motorcycle won't like that and will tell you in what could be VERY painful ways. LOL
Thank you for learning the rules about riding a motorcycle.
Fo9r all of you Motorcyclists out there, stay safe whilst driving, and if you want to scream the Melody to classical pieces whilst You're flying down the road on a motorcycle, do it, and do it LOUD, because It's something that we all might have to do, and I know there will come a situation where I have to do it because I just get so happy from the massive tanks of blessings that I've had come to past in my life. I know one day I'll end up having to literally scream some classical piece out with complete joy, and I have a feeling It's going to be arriving soon.
Thank you very much, may God bless you and Keep you, and Remember guys!
ONLY HE, can Love You PERFECTLY!!
Something isn't right, but I'm not sure what!
Hello, and what I wonderful cold and wintery morning that it is. Something is off with my CO2 or something but last night even with the Breath Rate of 20 and a VT of 480 I woke up feeling like my CO2 was elevated. I've increased my breath to 22 to see what happens. You know, honestly in the short periods of time I've tried it for a few minutes the most comfortable rates for me are the High rates like 30 with low Tidal Volumes, but I'm not an infant and I do not have CO2 monitoring to see what my CO2 is so unless I can get ETCO2 monitoring from a written script from my Dr. and UNLESS my DME actually has CO2 monitoring available for me, I really am not going to have any idea what it is, so I don't want to go ventilating myself at the comfortable rate of 30 and feel like my CO2 is perfect and that I'm most comfortable when My CO2 could be in the 20s, so I just need to figure something out. Now when I perform my IPV treatments that is probably the absolute most comfortable vent settings because I go into Pressure Ccontrol and I actually decrease the Inspiratory Time to 0.3 Seconds and set the breath Rate at 80 and that's the maximum ventilator rate for the LTV ventilators otherwise I'd be using higher rates for the IPV treatments. The rate of 80 is what works for me during my simulated IPV. LOL. I just wonder why the rate of 20 seems to be too slow. I'm not going anyhigher on my VT because my IBW does not call for it! More on the IBW in a later blog post. My SPO2 remained stable with the current PEEP of 12cmH2O and so for now we've got the oxygenation under good control.
For an adult the PEEP of 12 is pretty high, but hey, my Plateu Pressures are like 22 and 23 so they are under 25cmH2O and It is what keeps me good and oxygenated so that is what we will use. Prior to the increase in the PEEP ot was at 12cmH2O however when I started seeing desats I decided it was time to Increase the PEEP and see what happened, and what happened? The Desats stopped! That is what we were looking for, and so we reached our goal with the PEEP of 12 and so the PEEP will remain at 12cmH2O until further notice!
Thank you all and May God Bless you and Keep you.
Remember, ONLY HE, can Love you PERFECTLY!!
For an adult the PEEP of 12 is pretty high, but hey, my Plateu Pressures are like 22 and 23 so they are under 25cmH2O and It is what keeps me good and oxygenated so that is what we will use. Prior to the increase in the PEEP ot was at 12cmH2O however when I started seeing desats I decided it was time to Increase the PEEP and see what happened, and what happened? The Desats stopped! That is what we were looking for, and so we reached our goal with the PEEP of 12 and so the PEEP will remain at 12cmH2O until further notice!
Thank you all and May God Bless you and Keep you.
Remember, ONLY HE, can Love you PERFECTLY!!
Friday, March 25, 2016
Aaron's Minuet, and Prayer request!
What a wonderful cold day that it is. I don't like cold weather but in my heart it's my kind of weather. 99 Degrees F with Humidity 100%!!! yeahhhhh. I've had such a wonderful day!! I'm sitting here thinking about yesterday and how the recording of the Minuet honestly couldn't have gone better other than if Aaron were right there and I was playing that Minuet in his presence. LOL, but anyhow, we got there at the musical store at around 12:40 or something like that, and we got in so that I could sit down and practice a few times prior to the recording. This recording was a VERY VERY special event and so we wanted to not only look our best but SOUND THE BEST!! I had decided to dress up in suit and was going to dress up in a tie but that was not possible because of the trach, and I was quite disappointed because of that but hey, we got along without considering I was going to have to get along without it. I dressed up because This was something very very SPECIAL I was doing for Little Aaron. I was going to dress as if I were going to a classical music concert or to Church.
So after he had moved the grand piano to an area that would make videographic operations as efficient and as clear as possible, I sat down to practice at that grand piano and so practice I did. I played three times and then after that took place, we were ready to begin shooting the video, and so I told Heather the videographer which is also my assistant and my friend that I was ready and she counted to three and on three she began shooting and I talked a wee bit about Aaron and this Minuet and then I performed the Minuet ending with, "May God bless you and Keep you, ONLY HE, can Love You Perfectly!"
After Ending the video they set up the keyboard in the back in the harpsichord mode after larry showed me some music on his YouTube channel, and then they all were out in the front where all of the pianos were whilst I was back in the back playing a keyboard with such a wonderful and clear harpsichord mode on it with the volume Maxed out.
After playing for a while I came out and talked with them and we started talking about Bach and how a while back I tried to get my Kitty cat to listen to classical music and He didn't like it, and then I started joking with the store owner's wife about Bach because She had trouble saying Bach in the way that Germans and we all should be pronouncing Bach's name and so we were laughing histerically when she was trying to pronounce it and she got herself coughing and that made us all laugh even harder.
After that Heather and I headed to my house so that she could drop me off and talk to my Mom and Dad. We talked about some of the things we did whilst out like we were going to different stores trying to find baby mobiles that might be either at least in boxes or out for display where I could turn those awesome things on, but We could Not Find One. If You're wondering why in the world I would be looking for a Mobile, well a while back I posted a blog post about those musical things and let me tell you, those things play classical music sooooo beautifully!! We did not find ONE mobile. WOWWW!!!! REALLY?? LOL! But after I got home I put that video of "Aaron's Minuet," On YouTube and then started sending it to people on Facebook! I sent it to Aaron's Mother, and just posted it publically on Facebook so that People could see that Minuet and could learn a wee bit about Aaron.
So now I have a prayer request. Aaron's Mother has not responded to me yet. I'm asking that you all would please pray for Her and Aaron and pray that she does see this Minuet that I composed for Little Aaron, and that she will show it to Him and let him hear it. I really ask that you please pray for this. Thank you so much for reading this blog. May God bless you and Keep You!
REMEMBER, ONLY HE, can Love you PERFECTLY!!!!
So after he had moved the grand piano to an area that would make videographic operations as efficient and as clear as possible, I sat down to practice at that grand piano and so practice I did. I played three times and then after that took place, we were ready to begin shooting the video, and so I told Heather the videographer which is also my assistant and my friend that I was ready and she counted to three and on three she began shooting and I talked a wee bit about Aaron and this Minuet and then I performed the Minuet ending with, "May God bless you and Keep you, ONLY HE, can Love You Perfectly!"
After Ending the video they set up the keyboard in the back in the harpsichord mode after larry showed me some music on his YouTube channel, and then they all were out in the front where all of the pianos were whilst I was back in the back playing a keyboard with such a wonderful and clear harpsichord mode on it with the volume Maxed out.
After playing for a while I came out and talked with them and we started talking about Bach and how a while back I tried to get my Kitty cat to listen to classical music and He didn't like it, and then I started joking with the store owner's wife about Bach because She had trouble saying Bach in the way that Germans and we all should be pronouncing Bach's name and so we were laughing histerically when she was trying to pronounce it and she got herself coughing and that made us all laugh even harder.
After that Heather and I headed to my house so that she could drop me off and talk to my Mom and Dad. We talked about some of the things we did whilst out like we were going to different stores trying to find baby mobiles that might be either at least in boxes or out for display where I could turn those awesome things on, but We could Not Find One. If You're wondering why in the world I would be looking for a Mobile, well a while back I posted a blog post about those musical things and let me tell you, those things play classical music sooooo beautifully!! We did not find ONE mobile. WOWWW!!!! REALLY?? LOL! But after I got home I put that video of "Aaron's Minuet," On YouTube and then started sending it to people on Facebook! I sent it to Aaron's Mother, and just posted it publically on Facebook so that People could see that Minuet and could learn a wee bit about Aaron.
So now I have a prayer request. Aaron's Mother has not responded to me yet. I'm asking that you all would please pray for Her and Aaron and pray that she does see this Minuet that I composed for Little Aaron, and that she will show it to Him and let him hear it. I really ask that you please pray for this. Thank you so much for reading this blog. May God bless you and Keep You!
REMEMBER, ONLY HE, can Love you PERFECTLY!!!!
Thursday, March 24, 2016
Well, The Minuet is officially On YouTube, and I'm beyond happy!
It felt so good to get off the ventilator, and to come and play that Minuet today at that wonderful Grand Piano. I had such a wonderful time Performing "Aaron's Minuet in E Flat Major!" It almost sounds like a Lullaby, and I guess it could be. It could possibly be something that would sound good on one of those Musical Mobiles. Yeah, Here I go once again, droning on about those things. Those mobiles are indescribably AWWWWWWWWWESOME. I've had a wonderful day, and tomorrow, I will tell you all about it, but for tonight, I'll leave You all in the suspense, with the fact that This Minuet I composed for Little Aaron is now on YouTube and I've sent it to Rebekah, and I'm asking for prayer that she will see it and will show it to Aaron, and that somehow, It will bless them. Thank you very much, May God Bless you, and Keep you. Remember,
ONLY HE, can love you PERFECTLY!!
ONLY HE, can love you PERFECTLY!!
Aaron's Minuet!! (NOW ON Youtube!!
Well, we have this Minuet ready as It was uploaded to YouTube very recently. Here you go. I have sent it to Little Aaron. Thank youand God Bless.
Remember, ONLY HE, can Love you PERFECTLY!!
Remember, ONLY HE, can Love you PERFECTLY!!
THE DAY HAS ARRIVED!!!!!!!!!!
This wonderful wonderful day has arrived!!!!!!!!! IT IS HERE!! Today is the first performance of "Aaron's Minuet!" It is Happening, TODAY!!! I've woken up with thick secretions today, but other than that, I am READY for this HUGE day. Aaron had really touched my heart and NOW, it's almost time to play that exact piece that I've composed for Aaron in the key of E Flat. E Flat, just so happens to be one of my favorite keys. I find it ironic somewhat, that I've finished it on Trisomy 18 Awareness day. I really wish I had more blue stuff to wear on that day, but I put on whatever blue stuff that wasn't already dirty, and I took time to Think about Aaron, and to pray quite a bit for him, but I always do that. I'm indescribably excited about today's arrival. Now, I'm asking for prayers. Please pray that this Minuet somehow blesses Aaron's Family and that i can be a blessing to them somehow. Please pray this my dear friends. This is something that truly means more than words or anything could even begin to describe. Aaron was put into my heart for a reason, and whatever reason that is, I intend on honoring that reason to the absolute VERY best of my ability!! I will do EVERYTHING within my power to honor that. Thank you for reading another Blog Post. God bless you, and Keep you, and REMEMBER!!!
ONLY HE, can Love You Perfectly!!
ONLY HE, can Love You Perfectly!!
Wednesday, March 23, 2016
TOMORROW IS THE BIG DAY!!!
Well, that day is ALMOST HERE! That wonderful day when I get to play that Minuet I've composed for Aaron. I'm so excited. Tomorrow, Heather and I will be going up to Cundiff's Music store and I'll be doing this at the Grand Piano. They have an AWESOME keyboard with a truly realistic sounding Harpsichord Mode, but I've decided that due to the nature of this Piece I want it to be conducted on a Grandpiano for the video. I'm beyond excited because Aaron has truly touched my heart and being that Him and his family are musical, I wanted to write this Little Minuet Especially for Aaron. I plan on Dressing very very nicely as If I were going to Church or somebody's special event, because this is Aaron's Piece I've composed especially for him. I'm just so happy that the Lord Helped me write this piece and now I get to play it for Aaron on YouTube!
In other news I've decided that when I see my Pulmonologist This April I'm going to talk to him about Writing a script for a pulse ox. The reason why? Well, I have my own Besdise monitor as you know, but being that It's an ICU monitor, It does not have batteries, although now days most of these ICu monitors dohave batteries now days. I'm going to be talking to him about a pulse ox so that I can have a monitor to monitor my SpO2 continuously when I'm away from the bed like when I'm at the computer or at the piano. Being that I forget to breathe, I could desat at anytime, and have had this happen, if I'm actually off the vent at all, and sometimes ON THE VENT, but if I had a pulse ox that was portable, and that could plug in, I could move around freely with continuous monitoring. With my Central Apneas, or as I often refer to them as, CENTRALS, I really need CO2 monitoring as well and that's becoming commonly used in home ventilated patients, however I doubt if my DME actually has that type of equipment.
Now I have a huge library of pulse oximeters that I am familiar with and that I love, and so my preferred pulse oximeters are going to be listed below and the reasons why I would prefer them vs why I might not, so here we go.
The TOP of the list?
The Masimo Radical 8 pulse oximeter: This Pulse ox is the exact type Aaron uses. Yeah, He has a Radical 8 pulse ox! This pulse oximeter is loaded with functions including an easy to read LED Display, and very high sensitivity, and it also has ways to lock the monitor, although, why would I need to lock it since I'm the only one who's really going to be touching it! I like this oximeter because as many of you parents and caregivers of trach and vent patients already know, Masimo is a HUGE company in pulse oximetry and C.O. monitoring! They have an Iphone App that allows for SpO2 monitoring with the same technology that is in their pulse oximeters, and not only that, can you believe it's in an Iphone? WOW! But Masimo is very big in monitoring. This pulse oximeter that hits the top on my list is special being that It's the kind Aaron has.
Next on the Menu, or I'd rather say Minuet!! LOL
The G.E. Ohmeda TruSat 3500 Pulse Oximeter: This pulse oximeter has a bright LCD display with black numbers that are on a yellow/orange backlit background, and It has loads of features such as Data Recording, ability to Turn off the Backlight display if for some reason somebody wanted it off, It's got alarms, QRS beep as well as pitch Variability, but Just like the Masimo Oximeters, this thing has the Perfusion Index! What's the Perfusion Index? The Perfusion Index is a numeric value that indicates how strong a signal is being obtained, and can be useful in determination of the blood flow to a patient's extrimity, as well as just finding which probe placement sight is going to be your best option for the patient that you are monitoring. The Higher the Perfusion Index, the better. Why do I like this oximeter? I've actually used one of these years ago when somebody had one and hardly ever used it lke they were really suppose to. But I liked it because It was small, light weight, and It's soft backlight was very comforting at night. It eventually got picked up by the DME company if you're wondering what happened to it.
Next on the Minuet?
The Nellcor NBP-290 pulse oximeter: I like this oximeter because well Nellcor is another big pulse oximeter company and their series of oximeters are also very reliable and this oximeter is one of my favorites because of the three alarm priorities.
It has Low, Medium, and High Priority alarms, and these are indicated by different pitch alarm signals as well as the frequency of the signals. This oximeter has a green LED display screen that becomes red when an alarm is sounding.
For example, if somebody is desatting, the green SO2 Numeric is going to become red, and will flash. This will be accompanied by a sounding alarm. The reasons I really would rather this pulse ox be what I get if I have any of preventing it is because I can see LCD displays better, and there's no way to adjust the brightness on the NPB-290 oximeter like there is on the Masimo Radical 8 and also It doesn't have a Perfusion Index numeric like the other two oximeters that were mentioned above actually do!
Next on the Minuet?
Well this will list three oximeters in one listing, because they look the same and have some of the same functions.
The Nellcor NPB-395, NPB-595, and NPB-600 oximeters!
If you had a loved one on a pulse oximeter and you remember white numbers on a bright blue background, chances are they were on one of these things. These are awesome oximeters. They are LCD displays, they have very reliable monitoring and not only that, but these oximeters have an actual Waveform APleth. What do I mean by that? Well take for example the Ohmeda TruSat oximeter which has a bar on the right side of the screen to the right of everything else. This bar moves up and down to the person's pulse rate and indicate the signal quality. If a patient is poorly perfusing or the oximeter probe is faulty, or just not on there good, or if the patient's hands/feet are cold, you are going to get a weak or absent signal. What does a weak signal look like on a bar signal indicator? It barely moves, at all, if it even does.
With the waveform Pleth signal you can actually see a waveform going across the screen and depending on how acceptable or unacceptable that signal is will depend on how much of a wave pattern that you are going to get. I love this about these three oximeters, and my HP Viridia ICU monitor actually has one of these PLETH abilities on it, and oh yeah, It's got a perfusion Index.
The three oximeters we're discussing do nothave the Perfusion Index but Hey, You don't absolutely have to have one, and you really don't need one if you have a waveform PLETH capable oximeter.
OK, Next On the Minuet:
The Masimo Radical 7 Pulse Ox: This thing is truly Loaded. You're not really going to find one of these in home care that often, however, it does happen. Not only could I connect this to my ICU monitor, but this thing has a wonderful LCD backlight that's colored, and some I believe have the ability to change the display's color. This thing has the Waveform PLETH, It has Perfusion Index, It has the ability to take it off It's charging dock if for example I wanted to take it from the computer to the Piano, I could simply remove it from It's docking station, and Literally sit it on top of the piano whilst I'm playing something by one of my favorite composers, or maybe one of the Pieces that I have composed by myself. But this oximeter can also be set to a No baccklight mode if for some reason somebody wanted to do that, and the alarms can be completely turned off for example during Polysomnography, when You really don't want alarms getting in the way when You're observing somebody sleeping.
Reasons I might not want this oximeter? Well I really don't see any that I could even list here because this oximeter is truly a spectacular oximeter, but I'm still choosing the Masimo Radical 8 if I get that and the Masimo Radical 7 as my options. I know, I'm very picky, and I'll admit that, but hey, If I get a choice between which oximeter I'm going to be getting, and I will make sure I do get a choice, and if the Masimo Radical 8 is in that Menu, or as I'd say, MINUET of choices, I'm going with that RADICAL 8. LOL OK Next Oximeter!
The Nonin 9600 Pulse Oximeter: Well this one's also an awesome oximeter. It's got wonderful data reliability, It's got various alarm priorities, It's got LED brightness settings and not only that, this thing like the Masimo Radical 7 could be connected to my ICU monitor if I had the correct cables. It's got a nice Alarm LED so the colors of the LED indicate the alarm's priority, but also like the NPB-290 Oximeter It's LED numerics become RED if there's a parameter that goes out of the SET alarm limits.
Well there are Plenty of other oximeters in the Menu, or MINUET that I'm aware of, but I feel I've droned on long enough and you all get the picture of what I'm wanting, and why.
Essentially, I need an Oximeter with Alarms, obviously, one that's easy to see, and that's portable and easy to move around with. I also want the Soft Neonatal wrap sensors because I get a better reading when the oximeter is on my foot than my finger. It's ok if I'm just being monitored for a few minutes, but continuously, I'm going to want the monitor on my foot which is where I like to put the sensor for my ICU monitor's Pulse Ox at. It's much more comfortable, and I sleep with my hands near my face at night so that LED light from the oximeter won't be right near my eye, and also when I sleep I like to hold onto my ventilator circuit.
Well thank youfor reading or listening to another blog post, and I'm indescribably excited about the upcoming Performance of "Aaron's Minuet!"
I'm VERY VERY excited about this!!
Thank you, and may God Bless You, and Keep you.
REMEMBER, ONLY HE, can Love You PERFECTLY!!
In other news I've decided that when I see my Pulmonologist This April I'm going to talk to him about Writing a script for a pulse ox. The reason why? Well, I have my own Besdise monitor as you know, but being that It's an ICU monitor, It does not have batteries, although now days most of these ICu monitors dohave batteries now days. I'm going to be talking to him about a pulse ox so that I can have a monitor to monitor my SpO2 continuously when I'm away from the bed like when I'm at the computer or at the piano. Being that I forget to breathe, I could desat at anytime, and have had this happen, if I'm actually off the vent at all, and sometimes ON THE VENT, but if I had a pulse ox that was portable, and that could plug in, I could move around freely with continuous monitoring. With my Central Apneas, or as I often refer to them as, CENTRALS, I really need CO2 monitoring as well and that's becoming commonly used in home ventilated patients, however I doubt if my DME actually has that type of equipment.
Now I have a huge library of pulse oximeters that I am familiar with and that I love, and so my preferred pulse oximeters are going to be listed below and the reasons why I would prefer them vs why I might not, so here we go.
The TOP of the list?
The Masimo Radical 8 pulse oximeter: This Pulse ox is the exact type Aaron uses. Yeah, He has a Radical 8 pulse ox! This pulse oximeter is loaded with functions including an easy to read LED Display, and very high sensitivity, and it also has ways to lock the monitor, although, why would I need to lock it since I'm the only one who's really going to be touching it! I like this oximeter because as many of you parents and caregivers of trach and vent patients already know, Masimo is a HUGE company in pulse oximetry and C.O. monitoring! They have an Iphone App that allows for SpO2 monitoring with the same technology that is in their pulse oximeters, and not only that, can you believe it's in an Iphone? WOW! But Masimo is very big in monitoring. This pulse oximeter that hits the top on my list is special being that It's the kind Aaron has.
Next on the Menu, or I'd rather say Minuet!! LOL
The G.E. Ohmeda TruSat 3500 Pulse Oximeter: This pulse oximeter has a bright LCD display with black numbers that are on a yellow/orange backlit background, and It has loads of features such as Data Recording, ability to Turn off the Backlight display if for some reason somebody wanted it off, It's got alarms, QRS beep as well as pitch Variability, but Just like the Masimo Oximeters, this thing has the Perfusion Index! What's the Perfusion Index? The Perfusion Index is a numeric value that indicates how strong a signal is being obtained, and can be useful in determination of the blood flow to a patient's extrimity, as well as just finding which probe placement sight is going to be your best option for the patient that you are monitoring. The Higher the Perfusion Index, the better. Why do I like this oximeter? I've actually used one of these years ago when somebody had one and hardly ever used it lke they were really suppose to. But I liked it because It was small, light weight, and It's soft backlight was very comforting at night. It eventually got picked up by the DME company if you're wondering what happened to it.
Next on the Minuet?
The Nellcor NBP-290 pulse oximeter: I like this oximeter because well Nellcor is another big pulse oximeter company and their series of oximeters are also very reliable and this oximeter is one of my favorites because of the three alarm priorities.
It has Low, Medium, and High Priority alarms, and these are indicated by different pitch alarm signals as well as the frequency of the signals. This oximeter has a green LED display screen that becomes red when an alarm is sounding.
For example, if somebody is desatting, the green SO2 Numeric is going to become red, and will flash. This will be accompanied by a sounding alarm. The reasons I really would rather this pulse ox be what I get if I have any of preventing it is because I can see LCD displays better, and there's no way to adjust the brightness on the NPB-290 oximeter like there is on the Masimo Radical 8 and also It doesn't have a Perfusion Index numeric like the other two oximeters that were mentioned above actually do!
Next on the Minuet?
Well this will list three oximeters in one listing, because they look the same and have some of the same functions.
The Nellcor NPB-395, NPB-595, and NPB-600 oximeters!
If you had a loved one on a pulse oximeter and you remember white numbers on a bright blue background, chances are they were on one of these things. These are awesome oximeters. They are LCD displays, they have very reliable monitoring and not only that, but these oximeters have an actual Waveform APleth. What do I mean by that? Well take for example the Ohmeda TruSat oximeter which has a bar on the right side of the screen to the right of everything else. This bar moves up and down to the person's pulse rate and indicate the signal quality. If a patient is poorly perfusing or the oximeter probe is faulty, or just not on there good, or if the patient's hands/feet are cold, you are going to get a weak or absent signal. What does a weak signal look like on a bar signal indicator? It barely moves, at all, if it even does.
With the waveform Pleth signal you can actually see a waveform going across the screen and depending on how acceptable or unacceptable that signal is will depend on how much of a wave pattern that you are going to get. I love this about these three oximeters, and my HP Viridia ICU monitor actually has one of these PLETH abilities on it, and oh yeah, It's got a perfusion Index.
The three oximeters we're discussing do nothave the Perfusion Index but Hey, You don't absolutely have to have one, and you really don't need one if you have a waveform PLETH capable oximeter.
OK, Next On the Minuet:
The Masimo Radical 7 Pulse Ox: This thing is truly Loaded. You're not really going to find one of these in home care that often, however, it does happen. Not only could I connect this to my ICU monitor, but this thing has a wonderful LCD backlight that's colored, and some I believe have the ability to change the display's color. This thing has the Waveform PLETH, It has Perfusion Index, It has the ability to take it off It's charging dock if for example I wanted to take it from the computer to the Piano, I could simply remove it from It's docking station, and Literally sit it on top of the piano whilst I'm playing something by one of my favorite composers, or maybe one of the Pieces that I have composed by myself. But this oximeter can also be set to a No baccklight mode if for some reason somebody wanted to do that, and the alarms can be completely turned off for example during Polysomnography, when You really don't want alarms getting in the way when You're observing somebody sleeping.
Reasons I might not want this oximeter? Well I really don't see any that I could even list here because this oximeter is truly a spectacular oximeter, but I'm still choosing the Masimo Radical 8 if I get that and the Masimo Radical 7 as my options. I know, I'm very picky, and I'll admit that, but hey, If I get a choice between which oximeter I'm going to be getting, and I will make sure I do get a choice, and if the Masimo Radical 8 is in that Menu, or as I'd say, MINUET of choices, I'm going with that RADICAL 8. LOL OK Next Oximeter!
The Nonin 9600 Pulse Oximeter: Well this one's also an awesome oximeter. It's got wonderful data reliability, It's got various alarm priorities, It's got LED brightness settings and not only that, this thing like the Masimo Radical 7 could be connected to my ICU monitor if I had the correct cables. It's got a nice Alarm LED so the colors of the LED indicate the alarm's priority, but also like the NPB-290 Oximeter It's LED numerics become RED if there's a parameter that goes out of the SET alarm limits.
Well there are Plenty of other oximeters in the Menu, or MINUET that I'm aware of, but I feel I've droned on long enough and you all get the picture of what I'm wanting, and why.
Essentially, I need an Oximeter with Alarms, obviously, one that's easy to see, and that's portable and easy to move around with. I also want the Soft Neonatal wrap sensors because I get a better reading when the oximeter is on my foot than my finger. It's ok if I'm just being monitored for a few minutes, but continuously, I'm going to want the monitor on my foot which is where I like to put the sensor for my ICU monitor's Pulse Ox at. It's much more comfortable, and I sleep with my hands near my face at night so that LED light from the oximeter won't be right near my eye, and also when I sleep I like to hold onto my ventilator circuit.
Well thank youfor reading or listening to another blog post, and I'm indescribably excited about the upcoming Performance of "Aaron's Minuet!"
I'm VERY VERY excited about this!!
Thank you, and may God Bless You, and Keep you.
REMEMBER, ONLY HE, can Love You PERFECTLY!!
Tuesday, March 22, 2016
And so we say, "BYE BYE WINTER!"
Another Winter has come and gone. Another series of snow storms and a wee bit of ice. Another series of cold days and days where the drone of my Infrared heater was continuous. However, these days for now seem to be coming to an end. Very soon, I'll be able to put the heater up ready to drone on next winter. Very soon, I'll be able to enjoy 80 and maybe even 90 degree weather with High humidity levels. Spring has come. I'm so thankful.
But this winter has not been too bad, and in fact I've enjoyed the lovely blessings that Have come to meet me.
So many things have happened.
Aaron's Mother Put my video I did for Aaron on his blog.
I played a harpsichord, and a Piano forte!
I got to see, and feel a Hubbard tank, and hear the drone of it's Turbine Driven Whirlpool.
I've gotten to see my best friend Sammy so much this winter.
I've played on some keyboards that had great and realistic harpsichord modes.
I've gotten to hold two drones, one being a big drone, and the other one being a wee little drone.
I got to spend a few hours on Christmas Eve with Sammy and can you believe It was warm on Christmas Eve and Christmas?
I believe it was like 70 degrees.
Wow, Now that is a Christmas I wish we'd have EVERY year.
I've gotten to share Aaron's story.
So many things have happened this year.
I'm living better with my trach and ventilator and I'm like the Human Motorcycle.
Now the winter has come to a close and now Spring has come!
We're putting away our Winter coats and snow boots, and people are soon going to be filling up their pools and turning on the pumps to circulate the water inside of the pool, and maybe even turning on the heater/Coolers.
The huge Water parks are going to be opening up pretty soon and the wave pools will be activated so that tank by tank, water gets sent throughout the pool in huge waves at intervals similar to the breaths of a ventilator.
Water slides will be activated and people will come down these things like bullets from a gun.
Hopefully nobody gets injured at these parks and hopefully the equipment works propperly and nobody wakes up to a leaking pool that results in an evacuation from the buildings of hotels or any buildings that have swimming pools.
Ohhhhh, that'd be a mess.
We're seeing shorter and shorter nights, and longer and longer days as now the time has SPRUNG FORWARD!
Hurrayyyyyyyyyyyyyy, maybe us trach patients will have thinner secretions now that the Humidity levels are going to increase.
Maybe our plugging issues won't be so bad, afterall, It's not fun when you're plugging.
Such a wonderful year I feel, and I look forward to what God has to give us this year.
Thank you for reading another blog post and may God Bless you and Keep you.
Remember, ONLY HE, can love you perfectly!!!
But this winter has not been too bad, and in fact I've enjoyed the lovely blessings that Have come to meet me.
So many things have happened.
Aaron's Mother Put my video I did for Aaron on his blog.
I played a harpsichord, and a Piano forte!
I got to see, and feel a Hubbard tank, and hear the drone of it's Turbine Driven Whirlpool.
I've gotten to see my best friend Sammy so much this winter.
I've played on some keyboards that had great and realistic harpsichord modes.
I've gotten to hold two drones, one being a big drone, and the other one being a wee little drone.
I got to spend a few hours on Christmas Eve with Sammy and can you believe It was warm on Christmas Eve and Christmas?
I believe it was like 70 degrees.
Wow, Now that is a Christmas I wish we'd have EVERY year.
I've gotten to share Aaron's story.
So many things have happened this year.
I'm living better with my trach and ventilator and I'm like the Human Motorcycle.
Now the winter has come to a close and now Spring has come!
We're putting away our Winter coats and snow boots, and people are soon going to be filling up their pools and turning on the pumps to circulate the water inside of the pool, and maybe even turning on the heater/Coolers.
The huge Water parks are going to be opening up pretty soon and the wave pools will be activated so that tank by tank, water gets sent throughout the pool in huge waves at intervals similar to the breaths of a ventilator.
Water slides will be activated and people will come down these things like bullets from a gun.
Hopefully nobody gets injured at these parks and hopefully the equipment works propperly and nobody wakes up to a leaking pool that results in an evacuation from the buildings of hotels or any buildings that have swimming pools.
Ohhhhh, that'd be a mess.
We're seeing shorter and shorter nights, and longer and longer days as now the time has SPRUNG FORWARD!
Hurrayyyyyyyyyyyyyy, maybe us trach patients will have thinner secretions now that the Humidity levels are going to increase.
Maybe our plugging issues won't be so bad, afterall, It's not fun when you're plugging.
Such a wonderful year I feel, and I look forward to what God has to give us this year.
Thank you for reading another blog post and may God Bless you and Keep you.
Remember, ONLY HE, can love you perfectly!!!
Monday, March 21, 2016
I'm just so thankful!
You know, I'm just so thankful for so many things. OK So the bug zapper is ruines and I'll miss it's soft glow through my windows this year, but Hey, It's just a bug zapper. Life goes On. Besides, I'm just so thankful that I finished that Minuet I've composed for Aaron. It's in E Flat as you know however There's a small part where I transitioned into B Flat but only for a short period of time! I'm so thankful that God did what he did when He Placed Aaron into my heart, because it's for this reason Classical music has become even more special to me. I NEED it to think to be quite honest with you. I can't stop talking about Classical music. I can't stop playing it. I've gotta have it. I'm so thankful because since God has placed Aaron into my heart I've come closer to Him and I find myself drawing even closer to him every single day and often remembering to thank him for His Goodness, Love, blessings, and his New Mercies. It's also given me the desire even MORE to help other people. I've always had this and quite profoundly, but since learning Aaron's story and following his blog This desire has increase so much more to even more profound levels to the point where WHEN I GET THE CHANCe, there's no doubt, I'm going to help somebody if I can. It's just GOING to happen. Ya know life is so wonderful and I've cherished it even more the last few months. Even when I'm desatting and have to inflate my cuff and remain on the vent unable to talk, I find something to do, and that's what? Well It's sit at my keyboard in my room on the vent and playing classical music. Just because you are on a vent doesn't exactly mean that you can't play the piano. Well I took advantage of that blessing and so with my vent droning beside me I play music, and compose Music. In fact that's how it was when I finished "Aaron's Minuet," Friday.
With the desats, I needed my cuff inflated to get the precise Tidal Volume and so that I would not have to close my upper airway with my muscles that are in my throat, and so there I sat finishing that Minuet on my vent breathing at exactly 20 breaths Per minute. It was so wonderful and the fact I had actually completed on Trisomy 18 Awareness day was sort of Ironic I believe.
In other news I've been doing stuff on a computer simulator known as a Patient Simulator where I can simulate the care of a virtual patient if you will.
In this simulator I have a user Interface that consists of a library of medications such as Sedatives, Analgesic medications, Neuromuscular Blocking Agents, or NMBAs, and many other medications, as well as interventions like oxygen administration, ventilatory support, Defibrillation/Cardioversion, Transcutaneous Pacing, Inhalation Anesthetic medications, and many other Interventions like that, and then there is another screen that essentially looks like an ICU monitor where I can monitor vital signs such as the Blood Pressure, Heart Rate, Respiratory Rate, Oxygen Sat, and much more invasive parameters like the Pulmonary Artery Pressure, the Central Venous Pressure, the End-Tidal CO2, the Intracranial Pressure, and a few other parameters, so that Whilst I'm performing these Interventions whether it be maintaining a Septic Patient's Blood Pressure with Fluids and Vasoactive medications, or Administering a very very profound level of general Anesthesia, I can continuously monitor the patient to make sure that his parameters are in where they should be, and if they aren't, I GET THEM, where they're suppose to be.
In Other Words, This week, Heather and I are going to be going to one of two Music Stores so that I can perform this Minuet and get it on YouTube.
I want to do it most likely either at a keyboard with a realistic sounding Harpsichord Mode, or at a Grand Piano!
I love to play at Grand Pianos, But I still think the Harpsichord wins though, because of the indescribably Beautiful sound.
I want to Thank you all for your wonderful support, those who are in fact reading my blog, and may God bless you and Keep you all safe.
Remember, ONLY HE, can Love you PERFECTLY!
With the desats, I needed my cuff inflated to get the precise Tidal Volume and so that I would not have to close my upper airway with my muscles that are in my throat, and so there I sat finishing that Minuet on my vent breathing at exactly 20 breaths Per minute. It was so wonderful and the fact I had actually completed on Trisomy 18 Awareness day was sort of Ironic I believe.
In other news I've been doing stuff on a computer simulator known as a Patient Simulator where I can simulate the care of a virtual patient if you will.
In this simulator I have a user Interface that consists of a library of medications such as Sedatives, Analgesic medications, Neuromuscular Blocking Agents, or NMBAs, and many other medications, as well as interventions like oxygen administration, ventilatory support, Defibrillation/Cardioversion, Transcutaneous Pacing, Inhalation Anesthetic medications, and many other Interventions like that, and then there is another screen that essentially looks like an ICU monitor where I can monitor vital signs such as the Blood Pressure, Heart Rate, Respiratory Rate, Oxygen Sat, and much more invasive parameters like the Pulmonary Artery Pressure, the Central Venous Pressure, the End-Tidal CO2, the Intracranial Pressure, and a few other parameters, so that Whilst I'm performing these Interventions whether it be maintaining a Septic Patient's Blood Pressure with Fluids and Vasoactive medications, or Administering a very very profound level of general Anesthesia, I can continuously monitor the patient to make sure that his parameters are in where they should be, and if they aren't, I GET THEM, where they're suppose to be.
In Other Words, This week, Heather and I are going to be going to one of two Music Stores so that I can perform this Minuet and get it on YouTube.
I want to do it most likely either at a keyboard with a realistic sounding Harpsichord Mode, or at a Grand Piano!
I love to play at Grand Pianos, But I still think the Harpsichord wins though, because of the indescribably Beautiful sound.
I want to Thank you all for your wonderful support, those who are in fact reading my blog, and may God bless you and Keep you all safe.
Remember, ONLY HE, can Love you PERFECTLY!
Saturday, March 19, 2016
Oh yeah!
In this morning's post, I had forgotten to mention that the Minuet I composed for Aaron should be uploaded to YouTube within the next few days. I want to get it down first and then I'll upload the video to YouTube.
I would like to thank all of those who are actually reading this blog and let you know How greatful that I really am that you are doing that.
I'm truly blessed, and I am very thankful for the blessings I have.
May God bless you and Keep you, and Remember friends.
ONLY HE, can love you PERFECTLY!
I would like to thank all of those who are actually reading this blog and let you know How greatful that I really am that you are doing that.
I'm truly blessed, and I am very thankful for the blessings I have.
May God bless you and Keep you, and Remember friends.
ONLY HE, can love you PERFECTLY!
Aaron's Minuet, and a few other things!
What a wonderful Saturday morning it is here in my house.
It's cold again, but Hey, there's such thing as an Infrared Heater.
We actually have two, and one happens to be behind my chair where I'm sitting in front of my computer with my LTV ventilator on a table next to me droning at 20 breaths Per minute.
I'm so thankful today that I've woken up again although with thick secretions, but hey, I'm awake, and I'm thankful that I'm awake!
Well, Yesterday, It happened.
I've completed "Aaron's Minuet!"
As you know It is in the key of e Flat Major, and It's a rather slow Minuet.
I'm very thankful I finished it.
I finished it at my keyboard playing for quite a while yesterday whilst on my ventilator and so in the background my vent droned at it's steady rhythm of 20 breaths Per minute.
I'm desatting in the daytime, so if I wasn't on 24 hour ventilation, well If I'm desatting in the daytime It looks like pretty soon we'll be heading to comlete 24 hour ventilation, but Hey, It could always be worse.
I'm just so thankful that I've finished this Minuet.
In other words, Yesterday was "Trisomy 18 Awareness day!"
If you knew this you were suppose to wear blue, so I had on my blue headphones on my computer, and had on blue jeans.
I took a lot of time to thank God for Placing Aaron into my heart.
You know, since he's done this, I've really really become even closer to classical music, and It's essentially all I talk about except Motorcycles, Hubbard tanks, and Drones.
Why Motorcycles?
Motorcycles seem to cause me to think about some Fast classical Pieces such as the fifth and sixth movements to "Capriccio!"
Yeahhhh, here I go droning on about "Capriccio," again!
Here I go again.
Seriously, that piece is so addicting.
We know I'm desatting more so I'm on the ventilator essentially all the time now, but Hey, Ya know, as Long as I can play my keyboard I am fine with that, because I can simply turn to the right of my computer where the keyboard is, reposition my chair, turn on the Keyboard, set it to Harpsichord Mode, Max out the Volume, and then start playing, and that's what I do.
My ventilator continues droning and I continue breathing as It gives me the 20 breaths Per minute.
For those that don't feel like performing the calculations, that is exactly every three seconds.
If I do my IPV however I use the maximum ventilator rate of 80 Breaths Per Minute, but the IPV treatment is for another post.
I'm so thankful because my Bug zapper's UV Bulb that I ordered finally came in yesterday afternoon.
This Sunday, I plugged in the Bug zapper that I had left out there during the winter.
Yeah, I know, I should have brought that in, as much as I love the sound of that thing and the lights, but Hey, It got unplugged when I was in the Intensive Care Unit Last year because of a SIDS like ilness that is one of the reasons I've got my trach.
Well we plugged it in This Sunday and the black bulb started blinking and then croked.
The small green light that brings in only certain insects still works Thank The Lord, however the main Bulb croked.
I ordered a bulb this Monday on Ebay.
It came in yesterday, so tomorrow the plan is to perform the operation and Reinsert the new bulb.
I'm so excited to get that thing up and running, because I miss my Bug zapper's soft UV light shining through my window at night.
That light has a pleasant glow about it, and I LOVE IT.
I also love the Intermittent ZAP as bugs get fried.
Our Lord is so wonderful, and so mighty that He's helped me to finish this Minuet for Aaron.
Aaron has become so special to my heart, and Reading his blog has inspired me to become closer to Jesus and closer to the music from these wonderful composers.
Thank you for reading another blog post, May God Bless you, and May you have a wonderful day, and also, if you're plugging in your bug zapper this year, may it work propperly like These things are suppose to, and may it keep your house bug free.
God is wonderfl.
Remember, ONLY HE, can love you Perfectly!!
Thursday, March 17, 2016
DESATS and a special dream that I had!
O What a wonderful day that it is to give Thanks to God for his New mercies and for the sunny Skies. A few nights ago I brought in my patient monitor. It's an HP Viridia OmniCare Patient monitor like you might see in the hospital ICU. It can monitor ECG, Respiratory rate, Blood Pressure, my O2 sat, and also my Perfusion Index. It also has a printer. If you have specific modules you could monitor other parameters like the End-Tidal CO2 level. But I don't have those modules. Well now I'm monitoring my blood Pressure and O2 Sat. A couple nights ago I monitored my ECG/RESP along with Blood Pressure and O2 sat. The ECG was perfectly Insignificant. My Blood Pressure hovers around the low side of Normal when I'm out of it, but probably because I'm awful relaxed when I'm dreaming about harpsichords and Hubbard tanks. My Respiratory Status indicated that I don't even breathe over the vent in my sleep. that vent gives me it's set rate and when I'm asleep and when I'm awake I never breathe over that rate. NEVER. My O2 sat was fair for some of the night but did have some episodes where It would go into the 80s and higher 70s. We increased my rate last night with still present desats. I've decided that today I would increase my PEEP from 10cmH2O to 12cmH2O and see if that helps it. If it doesn't well I'll increase the PEEP to 14cmH2O and see what happens. Anyhow, that's the health side of things.
Last night, I had a very very special and very unique dream.
I don't know why I had it, or what brought it on, but It has me in a really really good mood this morning. It was about harpsichords and in my dream I played for Aaron. If you've read previous posts you'll know that I've talked quite about Aaron, who is the boy who has Trisomy 18. He has become very special to me and He's inspired me t become closer and closer to my music. I find myself listening to classical music Non-Stop. I find myself wanting to get up in the morning and one of the first things I want to do is start playing classical music on my electric Keyboard. In my dream I played for little Aaron. I don't remember where this dream took place, but I just know that I played for Aaron several of my favorite pieces on a full blown REAL harpsichord and that I woke up thinking, "Where's the harpsichord?" LOL. That was a rather unconventional dream.
I'm rather unconventional.
I'm VERY unconventional, but hopefully I'm lovable and Hopefully I'm not too hard to deal with.
LOL.
Thank you for hearing my story, or reading it, whatever you did, and May God bless you.
Remember, ONLY HE, CAN LOVE YOU PERFECTLY!!
Tuesday, March 8, 2016
I SAW THE HUBBARD TANK!!
Well, I have seen my a Hubbard tank for the first time. I've seen the Hubbard tank, and I'm soooooooooooooooooo thankful that I did get to see it. Video will be on the blog tomorrow. It's on YouTube, but I'm kind of tired to post it tonight, and besides, I want to keep ya all waiting. LOL! I got to see the tank, well the TANKS, because there were TWO tanks, I got to place my hand in the tanks, I got to turn on the turbine being that these tanks were just cleaned and filled with water, and I gave a lecture on the history of the tank, and it's methods of use for Both Burn patients, and The Polio patients back when Polio reared it's ugly head. I was not really expecting there to be water in it much less for them to fill the tank up and let me turn on the whirlpool, but that's how things worked today.
I'm so thankful.
I mean, when I saw water in the tank, I was a lil shocked, and when he turned on the whirlpool, and then allowed me to turn it on, I was really shocked, but very thankful.
Our Lord Jesus does answer our prayers.
This is proof right here.
He answered my prayer to see a Hubbard tank, He answered my prayer to see a harpsichord, and has answered so many other prayers.
I can't begin to describe how wonderful this day has went.
It's gone beyond wonderful.
Thank you for reading another blog post, and may God bless you.
REMEMBER, ONLY HE, can love you Perfectly!!
I'm so thankful.
I mean, when I saw water in the tank, I was a lil shocked, and when he turned on the whirlpool, and then allowed me to turn it on, I was really shocked, but very thankful.
Our Lord Jesus does answer our prayers.
This is proof right here.
He answered my prayer to see a Hubbard tank, He answered my prayer to see a harpsichord, and has answered so many other prayers.
I can't begin to describe how wonderful this day has went.
It's gone beyond wonderful.
Thank you for reading another blog post, and may God bless you.
REMEMBER, ONLY HE, can love you Perfectly!!
THE HUBBARD TANK!!!
The day has arrived. Today, I see the Hubbard tank. This last week has just flown by sooooo quickly. Thank you all for praying for little Aaron. Please continue to do so as he is still recovering. I'm so excited that He's home.
Today, I'm going to the University to see a Hubbard tank in real life. Pictures and videos will follow. Pictures on Facebook and possibly on here too. Videos will go up on YouTube. I just have to remember that the tank has to stay at the University, and can't come home with me. LOL. It'd look pretty strange, and would be very unconventional to steal a Hubbard tank. I don't think the police have ever seen somebody stealing one of those, so it would be the first hubbard Tank Thief most likely. But I would not want to steal. That'd be horrific. We'll go look at the tank, I'll touch the tank and feel It's components and then there will most likely be video footage of the tank, and once all of that has taken place, we'll be done. I've had my breathing treatments, and suctioned quite a bit of thick mucous plugs out this morning, so hopefully the plugging will not be so bad. Lately it's been awful, but hey, i'm seeing the Hubbard tank if it's the last thing I do. LOL!
Thank you, and God Bless you.
Remember, ONLY HE, Can love you PERFECTLY!!
Today, I'm going to the University to see a Hubbard tank in real life. Pictures and videos will follow. Pictures on Facebook and possibly on here too. Videos will go up on YouTube. I just have to remember that the tank has to stay at the University, and can't come home with me. LOL. It'd look pretty strange, and would be very unconventional to steal a Hubbard tank. I don't think the police have ever seen somebody stealing one of those, so it would be the first hubbard Tank Thief most likely. But I would not want to steal. That'd be horrific. We'll go look at the tank, I'll touch the tank and feel It's components and then there will most likely be video footage of the tank, and once all of that has taken place, we'll be done. I've had my breathing treatments, and suctioned quite a bit of thick mucous plugs out this morning, so hopefully the plugging will not be so bad. Lately it's been awful, but hey, i'm seeing the Hubbard tank if it's the last thing I do. LOL!
Thank you, and God Bless you.
Remember, ONLY HE, Can love you PERFECTLY!!
Monday, March 7, 2016
AARON IS HOME, I am SOOOOOOO HAPPY RIGHT NOW!
After a night of ventilator alarms due to coughing and a couple of other alarms I can't remember, but of pretty good sleep, I woke up to the need to Play the piano some. I wanted to Play "Capriccio!" So I did. Now I have gotten on Facebook, and Seen that Little Aaron is HOME!!!! YEAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!! I'm soooooooooo happy. No words can describe how much He's really taught me within the last couple of months. I'm so blessed that Jesus put Aaron into my life. thank you so much, and God Bless you.
ONLY HE, Can Love you perfectly!!
ONLY HE, Can Love you perfectly!!
Sunday, March 6, 2016
Aaron's status, and a few other things!
Wednesday, Aaron had his operation. I remember Tuesday night Mom and I had a word of prayer for Aaron. We then had another word of prayer together Wednesday morning and Wednesday night. In between those times, I was praying continuously. I have been so touched by Aaron's story and by him and his very inspiring family that He's really touched my heart. Thursday I saw the Blog Post that said he had come through the procedure well with somewhat more bleeding than expected and was requiring quite a higher amount of Oxygen bled in through the ventilator, so again Mom and I had a word of prayer for little Aaron. I've told many people about him, and on a tracheostmy Group I have kept people updated on him. The one thing that relieved me was that his Mother said that he seemed comfortable. This gave me joy and I praised God for that. Friday however, that evening my heart felt very saddened and I wanted to cry when I read that he was not smiling and that He was still on a lot of Oxygen via the ventilator. I had also read that Labs were being obtained including Blood cultures, and so again, Mom and I had a word of prayer. I felt my heart breaking for Aaron. I just felt sad. I wrote on my Facebook status and on the Tracheostomy Group I'm now in on Facebook about the news and then a while later His mother had come back after Supper and she said that he had smiled and that the labs came back all right. This made me happy and I praised God profusely and continued to ask him to bless Aaron. Yesterday morning, I had seen that he was doing better. This made me sooooo happy and Mom and I thanked God. Yesterday when Mom and I were in the car I had a word of prayer for Aaron. Last Night before I went to bed we had a word of prayer for him. Yesterday I had to have my trach changed again. Those trach changed are not pleasant, but you know, I kept one thing in my head and Ithink that kept me from really getting upset. "IF LITTLE AARON CAN DO IT, I CAN!" Trach changes are NOT fun, but if you have a trach, they are a necessary procedure. But you know, It's just amazing How God has Put Aaron into my heart. I'm keeping my friends continuously updated on Aaron. Please continue to pray for him, and his wonderful family.
IN OTHER NEWS, My mucous plugs have been quite frequent. I'm suctioning quite a lot. I'm performing a lot of IPV treatments with my ventilator.
I do not have the actual IPV ventilator, but since my ventilator does go up to 80 Breaths Per Minute, I can actually perform a rather poor man's IPV if you will call it that.
ALTHOUGH, IN NO WAY, am I poor.
If you know Jesus, and you have him in your life, YOU ARE NOT poor.
I love my Savior very very much, and the last couple of months, I've come soooooooooooooooo much closer to him.
The trach change and mucous plugs have caused a lot of respiratory issues but I'm using my ventilator on different settings and am taking another medication In my Nebulizer along with the Inhailed Steroid, and the Albuterol as well as the Normal Saline Nebulizer treatments. Thank you for reading this blog, and Please continue to pray for Aaron. May God Bless You, and KEEP YOU.
Remember, ONLY HE, CAN LOVE YOU PERFECTLY!!
IN OTHER NEWS, My mucous plugs have been quite frequent. I'm suctioning quite a lot. I'm performing a lot of IPV treatments with my ventilator.
I do not have the actual IPV ventilator, but since my ventilator does go up to 80 Breaths Per Minute, I can actually perform a rather poor man's IPV if you will call it that.
ALTHOUGH, IN NO WAY, am I poor.
If you know Jesus, and you have him in your life, YOU ARE NOT poor.
I love my Savior very very much, and the last couple of months, I've come soooooooooooooooo much closer to him.
The trach change and mucous plugs have caused a lot of respiratory issues but I'm using my ventilator on different settings and am taking another medication In my Nebulizer along with the Inhailed Steroid, and the Albuterol as well as the Normal Saline Nebulizer treatments. Thank you for reading this blog, and Please continue to pray for Aaron. May God Bless You, and KEEP YOU.
Remember, ONLY HE, CAN LOVE YOU PERFECTLY!!
Tuesday, March 1, 2016
Please keep Aaron in your prayers, and OH, a HUGE UPCOMING EVENT!
Well, as many of you know, from my video on YouTube and from hearing me tell you, Aaron is having an operation tomorrow.
Before I discuss what big event is occuring next Tuesday, I would like to ask you all to pray for Aaron.
Please pray for Aaron and his family.
Pray that God will comfort Little Aaron through the recovery process and when going in for the operation.
Please pray that he will speak to Aaron in the only way that Jesus Can.
Please pray that Jesus will Help Aaron's recovery proceed smoothly and that he will have as little pain as possible or NO PAIN.
Please pray that God will speak to Aaron's family and will give them the strength, and the courage to take Care of Aaron whilst he is recovering.
Please pray for the Surgeon's, pray that God will guide their hands, and please pray for the other healthcare staff that will be taking care of Aaron during his hospitalization including the Respiratory Therapists, Nurses, the Anesthesiologists, etc!
I know I've never met Aaron, but God put him into my heart and he has really touched me.
God puts people into somebody's heart for a reason, and I know he did that with me.
I've come closer to my classical music and want to play it a lot more often, and listen to it continuously.
I've come so much closer to Jesus Christ and I have noticed I pray so much more and spend so much more time Thanking him for his Goodness.
Thank you.
Now that I've discussed what I felt was the most important topic of this post we'll talk about what's happening next week.
The University near me just so happens to have a Hubbard tank.
My Dad recommended that I start calling around to try and find a Hydrotherapy tank that I could look at.
It just so happens that Dad's idea of calling Campbellsville University was the PERFECT IDEA.
Our plans were to call around to Universities nearby and then if they didn't have one, we'd have to go a lil bit more deep.
Well the FIRST ONE ends up being jackpot and I'm so thankful for this.
Who do I give thanks to?
God the Father.
My Dad.
My dear friend Heather and also my dear friend Mindy.
I'm so thankful for so many friends and that God has answered my prayers.
We called and the director of the Sports Unit has agreed to allow me to see this tank.
I'm not getting in the tank.
I'm not taking the tank with me sadly, LOL, but I am going to be seeing it.
Next Tuesday morning, Heather and I have an appointment.
We're going to go and see this tank.
What seeing means for me is Getting up close to the tank, feeling it, and touching the components like the turbine, the tank's inside, the hoisting mechanism if that's even on this tank, etc.
This tank might not have the lift actually in place being that in the sports facility most of the people who get in these tanks are not paralyzed and don't have really the need to be hoisted into and out of the tank.
I'm beyond exccited.
I'm trying to be calm though and just wait for what I know is coming.
PATIENCE IS KEY HERE!
I'm giving so much thanks to God the Father for what he's doing.
He's actually answered my prayers.
Our God is so mighty, and He's just so perfect.
Thank you for your time to read this blog, I hope I can bless somebody today.
Please remember little Aaron and his family as well as the Healthcare Staff that will be taking care of him.
God bless you all.
ONLY HE, Can Love You PERFECTLY!
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