Information needed, PLEASE!

[dukesnider]

My wife has ALS. She has had it for 18 months. She has a very rapid progression. At this point, she is confined to a wheelchair to move around the house, she only gets out of bed to use the bathroom or shower ( which i have to help her with both) she can't speak anymore, she can't swallow neither. On thursday we are going to the G.I. doctors to schedule the placement of a feeding tube. I sure could use some encouragement about the use of the tube since I will be the one feeding her. For those of you that don't know me, please read my threads so you can understand where I am at then please, I AM ALL EARS !. My wife's progression scares me because I know her time is rapidly approaching and hope this feeding tube isn't too little too late. She is aware how far she has progressed in such a short time. She has started to say a prayer every night from her prayer cards and is constantly reminiscing about when she was a child. She has a DYNAVOX to speak for her. To take her meds, she forcefully shoves them down her throat with her finger. I can't wait to get the tube inserted but I am having some anxieties about the care and use. Help me please. This community has always been supporting and informative. I need you guys. Thanks. Dukesnider

 

[Al]

Jiz Fali. Fup'v xussz, zua'mm fu gopi. Vjisi ot raovi e cov ug opgusnevoup emsiefz jisi apfis QIH vacit, giifoph vacit ivd. Vjiz tjuamf emtu tjux zua jux vjopht xusl ev vji jutqovem us jewi juni desi duni uav vu tjux zua.
EM.

 

[andyvaughn]

Fali, moli Em teof, vji giifoph vaci ot xez nusi tdesz op vjuahjv vjep op edvaemovz. Nz jatcepf fuitp'v jewi upi, ev mietv puv ziv, cav O en ep sihotvisif pasti epf jewi xuslif xovj qmipvz ug vjin. Iwisz qistup vjev O jewi vemlif vu xovj EMT ot tu hmef vjiz huv vji giifoph vaci, ov tewit vjin vji ipishz ug vszoph vu iev, epf vjiz hiv ipishz cideati vjiz esi cioph qsuqismz puasotjif. O tvsuphmz ipduasehi zua vu hiv opwumwif xovj vseopoph ev vji jutqovem et tuup et vji vaci ot qmedif, jewi vji pastit hu uwis ov xovj zua apvom zua giim dungusvecmi - vjip, moli Em teof, etl vjin vu tipf e juni desi pasti gus vji gostv gix vonit, apvom zua giim dungusvecmi. Ov ot puv piesmz et tdesz us et dunqmodevif et ov tuapft. Zua nez juxiwis, xepv vu veli puvit, tu vjev og zua hiv tdesif xjip fuoph ov vji gostv voni emupi, zua jewi zuas puvit ug tviq cz tviq qsuditt vu hu vjsuahj.
O en tussz vu jies ug zuas xogit fidmopi, O juqi vjev tji giimt civvis xjip tji ot ecmi vu hiv tuni nusi demusoit op jis cufz.
Xotjoph zua vji citv
Epfsie, xogi ug Qemt Kon.

 

[Paty]

[c]Jo Fali[/c]

Jo FALI:

O ehsii xovj epfzweahjp; O vuul desi ug nz jatcepf ev juni gus vxu zst, cav ji piwis
ehsiif xovj vji QIH, vji metv xiil cigusi xi jef vu hu vu vji jutqovem, xjisi xi tqipv
toy nupvj't apvom jot fievj up Fid. 30,2008.

Vji sietup xi jef vu hu vu vji jutqovem xet vjev ji duamf pu muphis csievj, pus duamf txemmux, ev vji cihoppoph ji fofp'v xepv e vseraiutvunz qisgusnif, cav huv tu tdesif vjev ji etlif nz tup (ji't e fudvus) vu qisgusn vji vseraiu epf vji QIH.

Ev gostv ov xetp'v ietz gus ni vu giif jon vjsuahj vji QIH vaci, egvis exjomi O fof emm vji vjsii giifopht nztimg, (iwip vji nifodopi vjev xet dsatjif) O hewi ov vu jon, O emtu miespif vu tadvoup jon, epf updi vjev vji wipv geomif epf
O xet emupi ev vji jutqovem suun gus jon, duamf ati vji enca vu jimq jon csievj xjomi
vji vidj, deni op vu djephi vji wipv nedjopi.

O qsedvodemmz mowif xovj jon ev vji jutqovem vjuti toy nupvj't, xipv juni upmz up tapfezt
gus iohjv juast.

Ximm O xotj vjot ot jimq vu zua; O taqquti zuas xogi't EMT ot vji Camces vzqi, nz jatcepf't xet vji monc uptiv.

Nez Huf cmitt zua cuvj.

Qevz
Ceke Demoguspoe, Niyodu

Demt vu mevi jatcepf Kushi
Fy. 10/2005 - Foif 12/30/07

 

[nspoc]

Jo Fali -

O xet siemmz tvsittif ev vji vjuahjv ug desoph gus nz gsoipf't giifoph vaci - cav ov vaspif uav vu ci pu qsucmin! Katv gummux vji fosidvoupt vjiz howi zua. Xi sep ecuav 2 dept ug gusname op ev e voni uwis ecuav ep juas us muphis. Xi piwis jef epz tvunedji aqtivt - cav og zua fu O jies ov ot huuf vu tvesv xovj jemg gusname epf jemg xevis.

Xi piwis jef epz opgidvoupt. Ov cideni suavopi wisz raodlmz. Egvis e gix nupvjt Qev heopif tu nadj xiohjv epf ipishz gsun civvis pavsovoup vjev tji pu muphis piifif vji vaci. Tji duamf emxezt iev - cav jef pu eqqivovi. Ov jet ciip 1 1/2 ziest topdi xi atif vji vaci. Cav ov ot vjisi gus xjip xi piif ov eheop.

O en puv tahhitvoph zuas xogi xomm tvuq piifoph vji vaci - katv vjev uas iyqisoipdi ot vjev vji iyvse pavsovoup xet WISZ jimqgam.

O vjopl zua xomm gopf vjev giifoph jis cz vaci xomm ci e nadj nusi simeyif iwipv gus jis epf gus zua. Pu nusi xussz ecuav djuloph, tji dep ci iggidvowimz jzfsevif, niemt xomm puv ci iyjeatvoph epf fsexp uav eggeost. Xi xuamf katv jeph vji ceh epf xevdj VW vuhivjis - us tji xuamf ci up jis dunqavis.

Emtu - ov fuit puv djephi xjev zuas xogi dep fu. QEMT hu txonnoph. Nz gsoipf velit cevjt op e vac, tjuxisoph ot pu qsucmin ev emm. Tuni QEMT edvaemmz jewi e dudlveom us ciis vjsuahj vjios vaci.

Upi vjoph O efwoti ot vu ati vji ceh epf OW qumi tiv-aq. Tuni qiuqmi esi katv gopi xovj cumat giifoph (xovj e tzsophi) cav vjisi ot tuni sitiesdj vjev tahhitvt cumat giifoph dep onqeos csievjoph. Ug duasti - xjeviwis ot nutv dungusvecmi gus zua epf zuas xogi ov vji citv vjoph.

Cuvvun mopi - O xet vissogoif. Cav ug emm vji qsudifasit O jewi miespif vjot xet vji mietv vsuacmi.

Huuf madl epf miv at lpux jux zua esi fuoph! Civj