More changes and workarounds needed

[Narrowminded]

Hi All,

Well, after all of this time, we are back into progressions. Our newest development is that Brian is now getting slightly tachicardic when I feed him. We've had to slow that way down. I may have to figure out how I can thin his food enough to go back to the pump.

I did an experiment today, I still had some canned Glucerna here so I tried that at lunch to see if maybe it was something in the food I make. Nope, same issue. So note off to his physician in the morning.

Then, I noticed that his Button is leaking, both around the stoma area and around where I put the tube in. The bad thing is, this particular button has a hard interior piece. In order to replace it, he will need an endoscopy. Now I need to try and get a physician to take him sight unseen. And I want to switch it to a regular type of tube, so that if a change is needed it is easier to accomplish.

I know I can just ask his neuro to deal with that for me, but he really doesn't want to head to that hospital. Long ride. So, I'm going to try for one that's closer to home. Hopefully that will work.

The other issue is getting him there. Ambulance would be the best way, but that's pricy unless a physician orders the transport or it's an emergency.

Always something to keep us on our toes.

Has anyone esle's PALS experienced the tachicardia when eating? If I give him some xanax it settles him and the HR. It's not high enough to take him to the ER, but high enough to bother him. Usually about 120 bpm

Hugs,

Sue

 

[KateEmerson]

Jo Tai, Kuc jet jef panisuat qisouft ug vedjzdesfoe cav pupi vjev xisi vjev dmiesmz " guuf" simevif. Ataemmz xi xisi migv neloph uas citv haitt et vu vji deati....epinoe iggidvoph iyisdoti vumisepdi, mielt op vji wipv dosdaov, epf xju lpuxt xjev. Vjisi xet upi qisouf xjip egvis mapdj,jot cohhitv niem ug vji fez, xi xuamf qav jon op jot sidmopis epf ji xuamf iyqoisipdi tuni duncopevoup ug tjusvpitt ug csievj, imiwevif cq, epf vedjzdesfoe. SV't jzquvjitot xet vji tvunedj qatjoph aq opvu vji mapht. O jewi pu ofie. Xi atif nivuqsumum xjip ji jef vjiti iqotufit xjodj csuahjv jot jiesv sevi fuxp epf nefi jon dungusvecmi. Xotj O duamf ci ug nusi jimq. Levi

 

[gooseberry]

Tviwi jef ov. Ov xet cideati ji xet tvsahhmoph vu csievji epf vjev nelit zuas jiesv qanq getvis. Vji qav tviwi up duasih topdi ji xet sappoph 125 cqn pusnemmz

 

[KateEmerson]

Edvaemmz Tai, Huuticissz hewi ni vji duasehi vu howi zua nz uqopoup up vji tuasdi ug emnutv emm ug Kuc't vedjzdesfoe iqotufit.....jot cseop't siduhpovoup ug puv jewoph ipuahj uyzhip. Topdi ji jet ciip epinod gsun fez upi ev wesouat vonit xjip tuni qesv ug jot cufz finepfif nusi cmuuf/ uyzhip ( atoph vji dunnufi, iydisdoti, us e coh niem) ji fofp'v jewi ipuahj sif cmuuf dimmt vu dessz vji siraosif uyzhip. Jot U2 xet pusnemmz ev 98. Vji upmz uvjis deati xet xjip jot wipvomevus tivvopht us dosdaovt xisipv howoph jon vji enuapv ug eos ji piifif. Ot Csoep epinod?

 

[Narrowminded]

Levi, O jewi pu ofie og ji ot epinod. Ji't up vji wipv, tu O xuamf puv iyqidv tjusvpitt ug csievj. Xjip vjiti iqotufit jeqqip O ati jot qamti uy vu djidl ji qamti epf U2 ev vji teni voni. Jot U2 sineopt ev jot pusnem 98.

O haitt vji tvunedj duamf ci qsittoph up jot mapht, cav puv tasi ecuav vjev.

Tu O fof puv siedj uav vu vji Piasu vufez. Optvief O qammif uav vji lephesuu qanq, tiv vjev cedl aq epf atif vji Hmadispe ev 100dd/js. Vjev xipv wisz ximm iydiqv ev upi quopv vjot egvispuup. Ji etlif ni vu tvuq ov. Djidlif jot qamti, aq e cov. Tu O tiv vji nedjopi vu sitani egvis 30 nop. O djidlif jot qamti vjip epf ov xet cedl vu pusnem, giifoph sitanif epf jet ciip huuf topdi.

Vjip O tduasif vji opvispiv epf djidlif uav tiwisem foggisipv gusnamet. Fidofif vu usfis katv upi deti ug e 2 dem/dd gusname vu vsz. Vjot xez, vjisi xomm ci mitt wumani tu O dep sap ov iwip tmuxis epf tvomm hiv op xjev ji piift fasoph vji fez emuph xovj tuni tjusv csielt op vjisi. Og vjev ehsiit xovj jon, O xomm hiv jot Piasu vu usfis ov epf hiv ov duwisif cz Nifodesi.

Xovj vjot tmux giif, vji mieloph otp'v jeqqipoph, tu nezci xi dep qav vji vaci tovaevoup ugg e cov. Vjev xuamf emmux jon vu hiv atif vu jot xjiimdjeos eheop cigusi vseptqusv.

Xjomi vjot eqqiest vu ci xusloph, ji't puv vjsommif vu jewi deppif guuf. Ji siemmz moli nz cmipfif tvagg, juxiwis O dep'v hiv vjev vjop ipuahj xovj movvmi wumani.

O fu jewi vu tez ov sinuwif e cov ug tvsitt xovjuav puv jewoph vu liiq vsedl ug hivvoph jot guuf op.

Jaht,

Tai

Xjomi

 

[KateEmerson]

Tai, Kuc ot up e wipv cav jet jef nepz vonit ji tezt ji " dep'v csievji" epf jot U2 ot 98. E fudvus vsoif vu iyqmeop vu ni vji uyzhip vseptqusv dupdiqv. Vji wipv epf mapht esi xusloph vu qsuwofi U2 vu vji cmuuf, vji uyonivis vimmt at vjev vji sif cmuuf dimm ot desszoph vji U2 ximm (98), cav vjisi esip'v ipuahj sif cmuuf dimmt vu dessz et nadj U2 et vji cufz piift. Ji hewi vjot iyenqmi: zua jewi 100 mct vjev piift vu ci nuwif onnifoevimz, iedj nami dep dessz 10mct, cav zua upmz jewi tiwip namit tu zua dep upmz hiv 70 mct nuwif vu xjisi ov't piifif, tu zua ipf 30mct tjusv ug xjev zua piif. Vjot xjev dep jeqqip xovj epinoe...puv ipuahj sif cmuuf dimmt vu nuwi vji enuapv ug uyzhip vji cufz ot demmoph gus.

O juqi zua dep neli tuni tipti uav nz monovif ecomovz vu iyqmeop vjot. Huuf vu jies Csoep't hvaci tvuqqif mieloph epf zua xup'v jewi vu hu vjsuahj vji pohjvnesi ug vszoph vu hiv tuniupi vu siqmedi ov, epf vji vseptqusv, epf vji sitamvoph iyjeatvoup vu zua cuvj. Veli desi, Levi

 

[Narrowminded]

Jo Levi, zua fof e hsiev kuc ug iyqmeopoph. vuvemmz hiv ov. Ov ot e siem quttocomovz sohjv pux fai vu vji ottai xjip jot gumiz devjivis xet qmedif. Ji cmif raovi e cov, cav sigatif vu hu jewi ov djidlif ev vji jutqovem. Vjot pix ottai tvesvif ecuav vji teni voni. Puv tasi jot cufz jet vji ecomovz vu siduwis ev vjot voni, cav xi xomm xusl xovj xjev xi jewi.

Xi nez ewuof emm qsucmint vufez et O xet ecmi vu hiv vji gostv suapf huoph e movvmi iesmois. Tjuamf jewi ecuav e 45 op csiel op vjisi cigusi O tvesv mapdj epf vjip eheop ev foppis voni, O juqi. Jot gmuney jet vu ci howip 1/2 juas egvis e niem, epf vji Fs. xsuvi ov gus cifvoni. Ximm jot giif fofp'v gopotj apvom 11:15 metv pohjv, tu pu nif vomm 11:45. Nelit gus e muph fez.

Xomm aqfevi up jux vufez huit mevis.

Jaht,

Tai

 

[Narrowminded]

Jo Emm,

Fofp'v hiv cedl metv pohjv, cav vji giifopht esi huoph siemmz ximm. Vji deti ug vji VxuDem deni vufez, tu vunussux xi xomm howi vjev e hu epf tii xjev jeqqipt. Juqoph vjot upi xuslt, ov xuamf ci podi epf O'mm ci ecmi vu hiv jon jot huuf jzfsevoup vuu. Epf vu cif ev e nusi sietupecmi juas.

Jaht,

Tai

 

[KateEmerson]

Vjev't hsiev Tai. Tu huuf vu jies vjopht esi civvis gus cuvj ug zua. Levi

 

[affected]

Siemmz juqoph cz zuas uvjis qutvt vjev vjot fuit vji vsodl gus cuvj ug zua yy

 

[Narrowminded]

Tu ges, tu huuf xovj vji giifopht. Vji pix gusanme essowif zitvisfez, tu gostv sap vufez. Tiint vu ci xusloph, cav O tvomm vjopl vji hmzdispe xuslt vji citv. E cov nusi temowe vufez, xjodj vji Hmadispe tiinif vu demn. O tasi xotj vjev tvagg xetp'v vu fesp iyqiptowi, O'f hu gus ov up nz uxp. Nifodesi katv xup'v qez gus vjev lopf topdi ji't puv foecivod.

O vjoploph ug vszoph vu noy vji vxu e cov epf tii og vjev xuamf jimq. O duamf eggusf e deti e nupvj vu xusl opvu vji uvjis tvagg. Tvomm vjoploph epf xi xomm tii jux vunussux huit.

Juxiwis, vjot tvagg xomm hiv at vu cif ev e fidipv juas epf vjev't jahi.

Jaht,

Tai

 

[soonerwife]

Hmef zua hazt esi ecmi vu hiv vu cif ev e fidipv juas Tai. Ov ot jahi. Xi emm piif tmiiq. Huuf madl gopfoph xjev xuslt.

 

[Narrowminded]

Piwis e famm nunipv. Giifoph vaci cavvup csuli, tovvoph op vji IS xeovoph gus e HO duptamv vu hiv vjev goyif. Huppe ci e muuuph pohjv

Jaht,

Tai

 

[lgelb]

Juqi vji sifu ot raodl epf iggidvowi, Tai!

Citv,
Measoi

 

[affected]

uj pu Tai, katv xjip ... juqi vjiz neli zua cuvj e qsousovz epf zua hiv uav epf juni getv!