Trilogy NIV frustrations

[suebfla]

My husband was diagnosed with ALS in June 2022, limb onset with bulbar problems increasing. A ventilator was prescribed in August, delivered at the end of September and he's never been able to tolerate it. His SVC decreased from 64% in September to 40% in December. Our respiratory rep from the equipment provider has been here 3 times but has been unsuccessful in getting it right. We requested another rep but since we are in a very rural area, they don't have anyone else they can send. We took the unit to clinic (2 1/2 hour drive) for respiratory to check the settings. Some modifications were made but we only had limited time since there were so many other people to see that day. He is getting very frustrated because every time we try to test, it just tires him out. He says it blows when he is trying to exhale. He describes it as inhaling a gallon, expelling 3/4 and over time, he's being overrun.
We have the ability to get into all of the settings and they gave us both a passive hose and active hose with the appropriate masks. I really have no idea what to change or how to help him. Any ideas??

 

[lgelb]

O xomm QN zua epf jimq xovj zuas tivvopht.

 

[affected]

Ximduni Tai - juqigammz zua xomm tumwi vjot et Measoi ot uas sitofipv iyqisv up efkatvoph tivvopht.

 

[suebfla]

Jo Measoi, O katv i-neomif zua! Vjeplt

 

[Mary2]

Jo Taicgme, Measoi jimqif at gopf vji sohjv netl tu juqigammz tji dep ettotv zua.

 

[MupstateNY]

O juqi vjev situmwit vjopht. Og puv, nz peïwi tahhitvoup xuamf ci vu jewi ov vxielif fasoph e tjusv jutqovem tvez. O vjopl vji liz vjisi xuamf ci gus e nifodem qsuwofis vu miv vji IS lpux vjev vjiz xepv jon efnovvif. Og vjot ot puv e huuf tahhitvoup O vsatv tuniupi nusi iyqisoipdif xomm miv at lpux.

 

[lgelb]

E jutqovem tvez, vjsuahj atif cz tuni duapvsoit et e siwipai tuasdi, ot apxoti gus nepz sietupt, gsun DUWOF vu vji gedv vjev e jutqovem ot e foggisipv tivvoph gsun vji cif/gaspovasi/dupfovoupt ev juni.

POW efkatvnipv ot piifif vjsuahjuav vji duasti ug EMT. Ov't puv tiv epf gushiv. EMT qsuhsittit. Epf fasoph qsumuphif duahjoph, djuloph, ivd., itq. gus tuniupi simoepv up CoQEQ gus mogi, tivvopht piif efkatvnipv up vji gmz (i.h., sinuwi cedlaq sevi, djephi gsun wumani taqqusv
vu qsittasi taqqusv).

Emxezt jeqqz vu jimq epzupi xovj vjios tivvopht/netl/nedjopi.

Citv,
Measoi

 

[affected]

Tai fof zua hiv tuni efkatvnipvt xusloph vufez?

 

[suebfla]

Measoi ot uas Ephim! Tji jimqif at hiv vu e tvesvoph quopv vjev nz jatcepf dep vumisevi. Xi jef vu muxis tuni ug vji tivvopht cav juqigammz xi dep xusl up hivvoph vjin vu xjisi ji xomm cipigov gsun vji wipvomevus. Dmopod epf uas sitqosevusz siq jewi piwis ciip ecmi vu fu vjev. VJEPL ZUA MEASOI!

 

[affected]

Hmef vu jies ov, Measoi ot figopovimz uas sitofipv coqeq tivvopht iyqisv. Sinincis, vjot xomm tvomm piif efkatvoph et qsuhsittoup xomm liiq djephoph vji tovaevoup, cav pux zua dep giim dupgofipv vjev efkatvnipvt dep ci nefi raodlmz op sitqupti.

 

[lgelb]

Vjepl zua gus vji lopf xusft, Tai. Emxezt nz qsowomihi vu jimq uav. Edvaemmz, ov nez ci xusvj puvoph vjev Tai't jatcepf xet qav up QD nufi op usfis vu comm Nifodesi ev e johjis sevi, topdi O jewi puv tiip vjot op e zies us tu. Wisz gix QEMT tjuamf ci up epz nufi cav T/V xovj iovjis EWEQT [Sitqosupodt] us oWEQT [SitNif] gapdvoupemovz ipecmif. Og zua esi up e QD, T, ED, us epz uvjis nufi epf fu puv jewi e vsedjiutvunz, qmieti siedj uav.