Rodiny um\u00edraj\u00edc\u00edch d\u011bt\u00ed nebo d\u011bt\u00ed s v\u00e1\u017enou diagn\u00f3zou \u010dasto \u017eij\u00ed v izolaci, t\u00e9ma b\u00fdv\u00e1 st\u00e1le tabu. Postupn\u011b se ale v \u010cesku rozv\u00edj\u00ed d\u011btsk\u00e1 paliativn\u00ed p\u00e9\u010de a usou\u017een\u00e9 rodiny se do\u010dk\u00e1vaj\u00ed podpory i radostn\u00fdch dom\u00e1c\u00edch chvilek s potomky.<\/p>\n\n\n\n
L\u00e9ka\u0159 Petr Lokaj nastoupil v roce 2000 na odd\u011blen\u00ed d\u011btsk\u00e9 onkologie ve Fakultn\u00ed nemocnici Brno. D\u011bti, kter\u00e9 se nepoda\u0159ilo vyl\u00e9\u010dit, dost\u00e1valy dobrou paliativn\u00ed p\u00e9\u010di, ale v nemocni\u010dn\u00edm prost\u0159ed\u00ed.<\/p>\n\n\n\n
\u201eVelmi dob\u0159e se pamatuji na prvn\u00edho um\u00edraj\u00edc\u00edho chlapce, jen\u017e m\u011bl mozkov\u00fd n\u00e1dor a um\u00edral na odd\u011blen\u00ed jen s\u00e1m s tat\u00ednkem, bez maminky. C\u00edtili jsme, \u017ee by to m\u011blo b\u00fdt jinak, proto jsme za\u010dali poskytovat paliativn\u00ed p\u00e9\u010di v dom\u00e1c\u00edm prost\u0159ed\u00ed,\u201c zavzpom\u00ednal brn\u011bnsk\u00fd l\u00e9ka\u0159, jen\u017e v oblasti d\u011btsk\u00e9 paliativy pat\u0159\u00ed k pr\u016fkopn\u00edk\u016fm. Od t\u00e9 doby ji\u017e sedmn\u00e1ct let doj\u00ed\u017ed\u00ed na Brn\u011bnsku za um\u00edraj\u00edc\u00edmi d\u011btsk\u00fdmi pacienty dom\u016f. Nejd\u0159\u00edv to byl jen on s\u00e1m a jeho bra\u0161na s l\u00e9ky, postupn\u011b kolem sebe vybudoval cel\u00fd paliativn\u00ed t\u00fdm.<\/p>\n\n\n\n
Podle n\u011bj jsou v tomto slo\u017eit\u00e9m oboru nejd\u016fle\u017eit\u011bj\u0161\u00ed t\u0159i v\u011bci: l\u00e9ky, empatie a lidskost. Ope\u010dov\u00e1vat mus\u00ed nejen d\u00edt\u011b, ale i jeho rodi\u010de, kte\u0159\u00ed se nach\u00e1zej\u00ed v mezn\u00ed situaci. Od l\u00e9ka\u0159\u016f si toti\u017e vyslechli, \u017ee jejich d\u00edt\u011b u\u017e nejde zachr\u00e1nit. N\u00e1sledn\u011b maj\u00ed obavu vz\u00edt si um\u00edraj\u00edc\u00edho potomka dom\u016f a postarat se o n\u011bj.<\/p>\n\n\n\n
Po p\u0159esunu do dom\u00e1c\u00edho prost\u0159ed\u00ed nicm\u00e9n\u011b d\u00edt\u011b v\u011bt\u0161inou pook\u0159eje a oni s n\u00edm mohou spole\u010dn\u011b pro\u017e\u00edt je\u0161t\u011b n\u011bkolik t\u00fddn\u016f \u010di m\u011bs\u00edc\u016f. \u201eM\u00e1 tam pokoj\u00ed\u010dek, babi\u010dku, psa a sv\u011bt je hned veselej\u0161\u00ed,\u201c vyl\u00ed\u010dil. Okam\u017eik p\u0159esunu z nemocnice by se podle n\u011bj nem\u011bl oddalovat, ob\u010das se mu stalo, \u017ee v sanitce vezli d\u00edt\u011b, kter\u00e9 v podstat\u011b jelo dom\u016f zem\u0159\u00edt.<\/p>\n\n\n\n
Speci\u00e1ln\u00ed paliativn\u00ed t\u00fdm ve Fakultn\u00ed nemocnici Brno \u010d\u00edt\u00e1 dnes u\u017e kolem dvaceti \u010dlen\u016f. Jsou v n\u011bm l\u00e9ka\u0159i, zdravotn\u00ed sestry, ale i nemedic\u00ednsk\u00e9 profese. V roce 2018 toti\u017e vzniklo Centrum prov\u00e1zen\u00ed na podporu rodi\u010d\u016f d\u011bt\u00ed se z\u00e1va\u017en\u00fdmi diagn\u00f3zami.<\/p>\n\n\n\n
Pe\u010dovat jako rodi\u010d 24\/7 o um\u00edraj\u00edc\u00ed d\u00edt\u011b je nelidsk\u00e9<\/p>\n\n\n\n
Mezi Lokajovy kolegyn\u011b tak pat\u0159\u00ed i zdravotn\u011b soci\u00e1ln\u00ed pracovnice Olga Marie Kr\u010dm\u00e1\u0159ov\u00e1. Jej\u00ed pr\u00e1ce je velice pestr\u00e1. I kdy\u017e jde o stejn\u011b star\u00e9 d\u011bti se stejnou diagn\u00f3zou, poka\u017ed\u00e9 pr\u00fd rodiny pot\u0159ebuj\u00ed n\u011bco jin\u00e9ho. Z\u00e1le\u017e\u00ed na jejich situaci, zku\u0161enostech, financ\u00edch i na kraji, kde \u017eij\u00ed. \u201eJe dobr\u00e9 zajistit jim p\u00e9\u010di na kl\u00ed\u010d. Informujeme, mus\u00edme \u0159\u00edkat i nep\u0159\u00edzniv\u00e9 zpr\u00e1vy, rad\u00edme rodi\u010d\u016fm, jak takov\u00e9 v\u011bci zpracovat, jak se za\u0159\u00eddit, rodinu stabilizujeme,\u201c popsala.<\/p>\n\n\n\n
S rodinou b\u00fdv\u00e1 v kontaktu i po odchodu z nemocnice. Mimo jin\u00e9 \u0159e\u0161\u00ed jejich finan\u010dn\u00ed podporu. \u010casto toti\u017e jeden z rodi\u010d\u016f pe\u010duje o v\u00e1\u017en\u011b nemocn\u00e9 d\u00edt\u011b 24 hodin denn\u011b 7 dn\u00ed v t\u00fddnu a rodin\u011b zcela vypadne jeden plat. Kr\u010dm\u00e1\u0159ov\u00e1 proto pom\u00e1h\u00e1 vy\u0159\u00eddit soci\u00e1ln\u00ed d\u00e1vky a tak\u00e9 oslovuje nadace s \u017e\u00e1dost\u00ed o podporu. Velmi si pochvaluje nadaci Dobr\u00fd and\u011bl, je\u017e jako jedna z m\u00e1la podporuje rodiny i dlouhodob\u011b. Rovn\u011b\u017e propojuje rodiny s ter\u00e9nn\u00edmi slu\u017ebami od rehabilitace po odleh\u010dovac\u00ed zdravotn\u00ed p\u00e9\u010di.<\/p>\n\n\n\n
\u201eStar\u00e1m se nap\u0159\u00edklad o rodinu, kde je maminka, jedno zdrav\u00e9 d\u00edt\u011b a jedno t\u011b\u017ece nemocn\u00e9, vy\u017eaduj\u00edc\u00ed nep\u0159etr\u017eitou p\u00e9\u010di. Nav\u00edc \u017eij\u00ed v m\u00edst\u011b, kde je v\u011bt\u0161ina ter\u00e9nn\u00edch slu\u017eeb nedostupn\u00e1. Pe\u010dovat v takov\u00e9 situaci o d\u00edt\u011b 24\/7 mi p\u0159ijde a\u017e nelidsk\u00e9. Poskytujeme jim aspo\u0148 dobrovoln\u00edky, kte\u0159\u00ed vy\u0159izuj\u00ed v\u011bci nebo nakupuj\u00ed,\u201c p\u0159ibl\u00ed\u017eila.<\/p>\n\n\n\n
N\u00e1ro\u010dn\u00e9 zam\u011bstn\u00e1n\u00ed si Kr\u010dm\u00e1\u0159ov\u00e1 nem\u016f\u017ee vynachv\u00e1lit. \u201ePr\u00e1ce v komer\u010dn\u00ed sf\u00e9\u0159e mi p\u0159estala d\u00e1vat smysl. Kdy\u017e se nyn\u00ed ohl\u00e9dnu za sebe, nevid\u00edm kamion prodan\u00fdch v\u011bc\u00ed, ale lidi, kter\u00fdm jsem pomohla v mezn\u00ed situaci a zlep\u0161ila jim kvalitu \u017eivota,\u201c vysv\u011btlila.<\/p>\n\n\n\n
Kr\u010dma\u0159ov\u00e1 je tak\u00e9 jednou z region\u00e1ln\u00edch koordin\u00e1torek online datab\u00e1ze mapuj\u00edc\u00ed organizace, kter\u00e9 poskytuj\u00ed slu\u017eby rodin\u00e1m s v\u00e1\u017en\u011b nemocn\u00fdmi d\u011btmi. Ta aktu\u00e1ln\u011b vznik\u00e1 za podpory Nadace rodiny Vl\u010dkov\u00fdch.<\/p>\n\n\n\n
Ani nehybn\u00e9 d\u00edt\u011b by nem\u011blo jen koukat do stropu<\/p>\n\n\n\n
Sou\u010dasn\u00e1 d\u011btsk\u00e1 paliativa se sna\u017e\u00ed zlep\u0161ovat kvalitu \u017eivota i d\u011btem s nejt\u011b\u017e\u0161\u00edmi diagn\u00f3zami a nep\u0159\u00edzniv\u00fdmi l\u00e9ka\u0159sk\u00fdmi progn\u00f3zami. D\u011btsk\u00e9 centrum Vesk\u00e1 u Pardubic, kter\u00e9 se star\u00e1 i o d\u011bti ve vegetativn\u00edm st\u00e1diu, zam\u011bstn\u00e1v\u00e1 proto speci\u00e1ln\u00ed pedago\u017eku – Blanku Svobodovou.<\/p>\n\n\n\n
Ta se sna\u017e\u00ed r\u016fzn\u00fdmi podn\u011bty maxim\u00e1ln\u011b stimulovat jejich smysly a mozek \u2013 zrakem, sluchem, hmatem. \u201eNe\u017e se za\u010dneme sna\u017eit vt\u00e1hnout d\u00edt\u011b do na\u0161eho sv\u011bta, mus\u00edme vstoupit do toho jeho a zjistit, co vn\u00edm\u00e1. A pak teprve m\u016f\u017eeme zkusit tyto dva sv\u011bty propojovat,\u201c vyl\u00ed\u010dila.<\/p>\n\n\n\n
Tyto d\u011bti \u010dasto \u0161patn\u011b vid\u00ed, sly\u0161\u00ed \u010di c\u00edt\u00ed. Svobodov\u00e1 se proto sna\u017e\u00ed \u201en\u00e1\u0161 sv\u011bt\u201c p\u0159in\u00e9st k nim. T\u0159eba mu d\u00e1vat do ruky zaj\u00edmav\u00e9 v\u011bci a pozorovat, na kter\u00e9 reaguje. Promlouvat na n\u011bj a sledovat reakce, je\u017e mohou m\u00edt t\u0159eba jen podobu zrychlen\u00e9ho dechu nebo intenzivn\u011bj\u0161\u00edho mrk\u00e1n\u00ed.<\/p>\n\n\n\n
Mimo jin\u00e9 v za\u0159\u00edzen\u00ed pe\u010duje o t\u0159in\u00e1ctiletou d\u00edvku, kter\u00e1 sem jezd\u00ed na odleh\u010dovac\u00ed pobyty. Do sedmi let byla zdrav\u00e1, ale po zdravotn\u00edm incidentu skon\u010dila ofici\u00e1ln\u011b ve vegetativn\u00edm stavu a hlubok\u00e9 ment\u00e1ln\u00ed retardaci.<\/p>\n\n\n\n
\u201eKdy\u017e se mi s n\u00ed ale poda\u0159ilo nav\u00e1zat kontakt, uk\u00e1zalo se, \u017ee si pamatuje v\u0161e p\u0159ed dan\u00fdm incidentem a dok\u00e1\u017ee reagovat,\u201c vypr\u00e1v\u011bla Kr\u010dm\u00e1\u0159ov\u00e1. Postupn\u011b nacvi\u010dili komunikaci, kdy souhlas d\u00e1v\u00e1 najevo z\u0159eteln\u00fdm pohybem nohy, nesouhlas sk\u0159\u00edp\u00e1n\u00edm zuby. \u201eNyn\u00ed je mnohem veselej\u0161\u00ed, c\u00edt\u00ed se plnohodnotn\u011bji, proto\u017ee m\u016f\u017ee spolurozhodovat o sv\u00e9m \u017eivot\u011b,\u201c poznamenala. P\u0159istoupili i ke vzd\u011bl\u00e1v\u00e1n\u00ed, d\u00edvka b\u00fdv\u00e1 zaujata po\u010d\u00edt\u00e1n\u00edm, abecedou, barvami, ukazov\u00e1n\u00edm r\u016fzn\u00e9ho po\u010dtu p\u0159edm\u011bt\u016f.<\/p>\n\n\n\n
\u201eMnoz\u00ed si \u0159\u00edkaj\u00ed, \u017ee vzd\u011bl\u00e1v\u00e1n\u00ed t\u011bchto d\u011bt\u00ed nem\u00e1 smysl, rehabilituje se pouze t\u011blo a du\u0161e se nech\u00e1v\u00e1 napospas. Ale d\u00edt\u011b nereaguje \u010dasto proto, \u017ee mu to t\u011blo neumo\u017en\u00ed, jeho vnit\u0159n\u00ed sv\u011bt v\u0161ak m\u016f\u017ee b\u00fdt bohat\u00fd. P\u0159i rozv\u00edjen\u00ed t\u011bchto d\u011bt\u00ed pracn\u011b stav\u00edme pomyslnou v\u011b\u017e z kostek. \u010casto spadne a mus\u00edme za\u010d\u00edt znovu, jinak. Ale m\u00e1 to cenu,\u201c uzav\u0159ela.<\/p>\n\n\n\n
Nadace rodiny Vl\u010dkov\u00fdch a d\u011btsk\u00e1 paliativa<\/p>\n\n\n\n
Man\u017eel\u00e9 Ond\u0159ej a Katar\u00edna Vl\u010dkovi zalo\u017eili Nadaci rodiny Vl\u010dkov\u00fdch, aby rozvinuli d\u011btskou paliativn\u00ed p\u00e9\u010di v \u010cesku a pomohli vybudovat co nejlep\u0161\u00ed s\u00ed\u0165 slu\u017eeb pro pot\u0159eby rodin pe\u010duj\u00edc\u00edch o v\u00e1\u017en\u011b nemocn\u00e9 d\u00edt\u011b. Do nadace vlo\u017eili 1,5 miliardy korun na dal\u0161\u00ed investice. Z v\u00fdnos\u016f investic podporuj\u00ed d\u011btskou paliativu po cel\u00e9 republice a stav\u00ed d\u011btsk\u00e9 paliativn\u00ed centrum a d\u011btsk\u00fd hospic v Praze na Cibulce.<\/p>\n\n\n\n
Dosud podpo\u0159ili 250 projekt\u016f, rozdali 186 milion\u016f korun. Upozor\u0148uj\u00ed, \u017ee d\u011btskou paliativn\u00ed p\u00e9\u010di potrebuje 15 tis\u00edc rodin. Na jejich str\u00e1nk\u00e1ch lze proto po\u017e\u00e1dat o pomoc s rozvojem projekt\u016f i lze p\u0159isp\u011bt na jejich aktivity.<\/p>\n\n\n\n
Zuzana Hronov\u00e1<\/p>\n\n\n\n
Den\u00edk.cz<\/p>\n\n\n\n
https:\/\/www.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Rodiny um\u00edraj\u00edc\u00edch d\u011bt\u00ed nebo d\u011bt\u00ed s v\u00e1\u017enou diagn\u00f3zou \u010dasto \u017eij\u00ed v izolaci, t\u00e9ma b\u00fdv\u00e1 st\u00e1le tabu. Postupn\u011b se ale v \u010cesku rozv\u00edj\u00ed d\u011btsk\u00e1 paliativn\u00ed p\u00e9\u010de […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":21454,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-61188","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/61188","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=61188"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/61188\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/21454"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=61188"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=61188"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=61188"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}