- Joined
- Apr 6, 2024
- Messages
- 20
- Reason
- CALS
- Diagnosis
- 04/2024
- Country
- US
- State
- TX
[our "newly diagnosed" story starts here. now on to chapter 2...]
The AirCurve 10 ST-A that we purchased out of pocket was finally delivered on Monday. I had to chase the UPS truck around the neighborhood to retrieve it, due to a miscommunication... but I now have it in hand. Settings below were determined in consultation with the marvelous mensch of moderation, lgelb.
Edited to emphasize LGELB's CONTEXT/CAUTION as noted below: These specific "start low, go slow" settings were individually determined for my PALS health and circumstances, and are noted in detail here only for my own reference. -- beastie
* Mode iVAPS
* EPAP 4
* min PS 4, max 12
*** iBR disabled
* Target pt rate 8
* Target Va 1.5L/minute
* Ti max 1.9
* Ti min 0.7
* Rise time 400ms
* Trigger medium
* Cycle medium
* Height (in inches) 64
* Mask Full face
* Ramp Off
*** Humidity level 2
* All extraneous alarms off
* SmartStart off
Items marked with triple asterisks are those that vary from the starting points suggested in consult. Started lower on the humidity setting because our room air is not dry and we don't yet have climate tubing. Also, cannot disable iBR on this device in iVAPS mode as suggested (can only turn that on or off in ST mode), but the Target pt rate 8 that was suggested IS the lowest end of available iBR setting, so... is this a problem or not?
=========================
Monday afternoon, 04.22.2024
session run time: 25 minutes
=========================
We spent a few minutes (very few minutes) trying out the DreamWear fullface masks that we ordered with the AirCurve. We tried the Medium, and the Medium Wide. In both cases, my sweetie was sitting upright in his computer chair, and complained that the masks interfered with breathing thru his nose, and he looked really uncomfortable. By chance, our son had just rec'd a new shipment of his CPAP supplies, including new AirTouch F20 headgear and (medium) masks, so we decided to try that instead.
After fitting the AirTouch mask, my sweetie still had an issue with breathing thru nose, but not as bad as with the DreamWear. He wrote a couple of notes while still sitting upright in the computer chair: "After I start to inhale, it starts to send too much air (inhale)" ... "I'm breathing thru my mouth". I asked if that was a problem and he wrote "I don't know. Do people breathe thru their mouths?" He then added "I don't know if it this is too much air on the inhale." At my urging, he then tried positioning on couch, laying on his RIGHT side with his head on pillow and feet on the floor, as usual. He then wrote "I can breathe thru my nose on this side." He maintained that position for a little bit, just as a trial run. We did not use humidifier during this initial test.
BASIC stats: AirCurve idiot light for Mask Seal was GREEN
=========================
Monday evening, 04.22.2024
session run time: 1H 25m
=========================
According to my love's report about attempt to use the device on his own overnight: He got up from the recliner (where he starts his nightly sleep cycle) and put on the mask. He laid down on the couch on his LEFT side. He said it felt kind of weird, and that he was still kind of afraid of it. He stayed on his side and fell asleep after a bit. He woke up a little later... not sure why, whether it was bathroom urge, or the mask bothering him, or what... and took off mask/turned off device for the rest of the night. He said that the low level of humidity (we used setting 2) wasn't noticeable or problematic, but that the experience was still just weird. He said that it made him think about drowning, but as far as he could recall that seemed to be more just a thought than an actual sensation.
BASIC stats: AirCurve idiot light for Mask Seal was RED; Humidifier light was GREEN
=========================
Tuesday nap, 04.23.2024
session run time = 2 hours
=========================
2:20pm - Installed newly purchased SD card for eventual use with card reader & 3rd party software. Refitted the AirTouch F20 headgear and (medium) mask so that it wasn't pinching his nostrils quite as much. Sitting up on the couch without the hose attached, he said that he felt like he was getting about 20% use of right nostril and 50-60% use of left nostril. Still not ideal but better than yesterday.
2:25pm - Attached hose and started device. He remained in sitting position for about 10 minutes, then wrote note: "It feels different than it has before. Yesterday, it felt like it was pausing and then blowing air real hard. Now it waits for me to start to inhale and then it blows air."
2:35pm - He laid down on the couch on his LEFT side, head resting on pillow and with (per his usual) his legs hanging off the couch and feet on floor. He napped in that position for 2 hours, and appeared to be sleeping comfortably. He woke up when I unsuccessfully tried to slip CVS Health pulse oximeter onto his finger. (It was nearing time that I had planned to wake him anyway.) I took pulse ox after he sat up. When he removed his mask he said that he didn't notice feeling any different than usual (no better or worse) after a nap, but that (without NIV) he would usually wake up after 60-90 minutes, instead of sleeping 2 hours straight.
BASIC stats: %Sp02 started at 90, then settled around 93 * PRbpm 73 * AirCurve idiot lights for Mask Seal & Humidifier were both GREEN
=========================
Tuesday night, 04.23.2024
session run time = 1H 30m
=========================
9:50pm - He settled into recliner (his usual starting place for the night) with back tilted slightly and feet down. He only had mask/device on for a few minutes when he realized he had forgotten several bedtime items (azelastine nasal spray, dulcolax, and prepping *PM dose of riluzole). He decided after getting those to wait on using bipap until he moved to sofa later, and said he might also do another round of nebulizer before that.
11:45pm - My sweetie made a bathroom trip, then put on his mask and laid down on the sofa on his RIGHT side.
12:30am - I passed by the living room. Sweetie was still on the sofa, now laying on his LEFT side. He leveraged himself up on one elbow and said "I can't go to sleep." We chatted for a minute and I asked him to give it another hour or so, then discontinue NIV if he was still awake.
1:00am - My love came into bedroom and said that he's stopping NIV use for the moment because he still can't sleep. He said that it seems like maybe the ryhthm changes when he starts to fall asleep and that wakes him back up. Also said it was maybe making a wheezing sound. I checked the idiot lights and-- no surprise-- Mask Seal was RED. Not sure what changed between successful nap earlier today, and this round.
Sweetie tried again at some point overnight, but only briefly. Same problem as earlier, clouldn't sleep.
BASIC stats: %Sp02 at 92, then * PRbpm 78 * AirCurve idiot light for Mask Seal was RED; Humidifier light was GREEN
==================
*Side note about riluzole: Taking the AM dose on empty stomach is easy, the PM dose is more of a problem. We eat dinner around 7pm, then my sweetie has ice cream & cookies, and sometimes continues to snack on other stuff before (typically) 10pm bedtime. For now, in order to get to the 2-hour after meals interval, he's putting the med bottle on his side table to take when he wakes up for his first bathroom trip of the night.
The AirCurve 10 ST-A that we purchased out of pocket was finally delivered on Monday. I had to chase the UPS truck around the neighborhood to retrieve it, due to a miscommunication... but I now have it in hand. Settings below were determined in consultation with the marvelous mensch of moderation, lgelb.
Edited to emphasize LGELB's CONTEXT/CAUTION as noted below: These specific "start low, go slow" settings were individually determined for my PALS health and circumstances, and are noted in detail here only for my own reference. -- beastie
* Mode iVAPS
* EPAP 4
* min PS 4, max 12
*** iBR disabled
* Target pt rate 8
* Target Va 1.5L/minute
* Ti max 1.9
* Ti min 0.7
* Rise time 400ms
* Trigger medium
* Cycle medium
* Height (in inches) 64
* Mask Full face
* Ramp Off
*** Humidity level 2
* All extraneous alarms off
* SmartStart off
Items marked with triple asterisks are those that vary from the starting points suggested in consult. Started lower on the humidity setting because our room air is not dry and we don't yet have climate tubing. Also, cannot disable iBR on this device in iVAPS mode as suggested (can only turn that on or off in ST mode), but the Target pt rate 8 that was suggested IS the lowest end of available iBR setting, so... is this a problem or not?
=========================
Monday afternoon, 04.22.2024
session run time: 25 minutes
=========================
We spent a few minutes (very few minutes) trying out the DreamWear fullface masks that we ordered with the AirCurve. We tried the Medium, and the Medium Wide. In both cases, my sweetie was sitting upright in his computer chair, and complained that the masks interfered with breathing thru his nose, and he looked really uncomfortable. By chance, our son had just rec'd a new shipment of his CPAP supplies, including new AirTouch F20 headgear and (medium) masks, so we decided to try that instead.
After fitting the AirTouch mask, my sweetie still had an issue with breathing thru nose, but not as bad as with the DreamWear. He wrote a couple of notes while still sitting upright in the computer chair: "After I start to inhale, it starts to send too much air (inhale)" ... "I'm breathing thru my mouth". I asked if that was a problem and he wrote "I don't know. Do people breathe thru their mouths?" He then added "I don't know if it this is too much air on the inhale." At my urging, he then tried positioning on couch, laying on his RIGHT side with his head on pillow and feet on the floor, as usual. He then wrote "I can breathe thru my nose on this side." He maintained that position for a little bit, just as a trial run. We did not use humidifier during this initial test.
BASIC stats: AirCurve idiot light for Mask Seal was GREEN
=========================
Monday evening, 04.22.2024
session run time: 1H 25m
=========================
According to my love's report about attempt to use the device on his own overnight: He got up from the recliner (where he starts his nightly sleep cycle) and put on the mask. He laid down on the couch on his LEFT side. He said it felt kind of weird, and that he was still kind of afraid of it. He stayed on his side and fell asleep after a bit. He woke up a little later... not sure why, whether it was bathroom urge, or the mask bothering him, or what... and took off mask/turned off device for the rest of the night. He said that the low level of humidity (we used setting 2) wasn't noticeable or problematic, but that the experience was still just weird. He said that it made him think about drowning, but as far as he could recall that seemed to be more just a thought than an actual sensation.
BASIC stats: AirCurve idiot light for Mask Seal was RED; Humidifier light was GREEN
=========================
Tuesday nap, 04.23.2024
session run time = 2 hours
=========================
2:20pm - Installed newly purchased SD card for eventual use with card reader & 3rd party software. Refitted the AirTouch F20 headgear and (medium) mask so that it wasn't pinching his nostrils quite as much. Sitting up on the couch without the hose attached, he said that he felt like he was getting about 20% use of right nostril and 50-60% use of left nostril. Still not ideal but better than yesterday.
2:25pm - Attached hose and started device. He remained in sitting position for about 10 minutes, then wrote note: "It feels different than it has before. Yesterday, it felt like it was pausing and then blowing air real hard. Now it waits for me to start to inhale and then it blows air."
2:35pm - He laid down on the couch on his LEFT side, head resting on pillow and with (per his usual) his legs hanging off the couch and feet on floor. He napped in that position for 2 hours, and appeared to be sleeping comfortably. He woke up when I unsuccessfully tried to slip CVS Health pulse oximeter onto his finger. (It was nearing time that I had planned to wake him anyway.) I took pulse ox after he sat up. When he removed his mask he said that he didn't notice feeling any different than usual (no better or worse) after a nap, but that (without NIV) he would usually wake up after 60-90 minutes, instead of sleeping 2 hours straight.
BASIC stats: %Sp02 started at 90, then settled around 93 * PRbpm 73 * AirCurve idiot lights for Mask Seal & Humidifier were both GREEN
=========================
Tuesday night, 04.23.2024
session run time = 1H 30m
=========================
9:50pm - He settled into recliner (his usual starting place for the night) with back tilted slightly and feet down. He only had mask/device on for a few minutes when he realized he had forgotten several bedtime items (azelastine nasal spray, dulcolax, and prepping *PM dose of riluzole). He decided after getting those to wait on using bipap until he moved to sofa later, and said he might also do another round of nebulizer before that.
11:45pm - My sweetie made a bathroom trip, then put on his mask and laid down on the sofa on his RIGHT side.
12:30am - I passed by the living room. Sweetie was still on the sofa, now laying on his LEFT side. He leveraged himself up on one elbow and said "I can't go to sleep." We chatted for a minute and I asked him to give it another hour or so, then discontinue NIV if he was still awake.
1:00am - My love came into bedroom and said that he's stopping NIV use for the moment because he still can't sleep. He said that it seems like maybe the ryhthm changes when he starts to fall asleep and that wakes him back up. Also said it was maybe making a wheezing sound. I checked the idiot lights and-- no surprise-- Mask Seal was RED. Not sure what changed between successful nap earlier today, and this round.
Sweetie tried again at some point overnight, but only briefly. Same problem as earlier, clouldn't sleep.
BASIC stats: %Sp02 at 92, then * PRbpm 78 * AirCurve idiot light for Mask Seal was RED; Humidifier light was GREEN
==================
*Side note about riluzole: Taking the AM dose on empty stomach is easy, the PM dose is more of a problem. We eat dinner around 7pm, then my sweetie has ice cream & cookies, and sometimes continues to snack on other stuff before (typically) 10pm bedtime. For now, in order to get to the 2-hour after meals interval, he's putting the med bottle on his side table to take when he wakes up for his first bathroom trip of the night.
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