Weblog van een gezin met een HSP kindje

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Baclofen pomp geplaatst 09-09-2009

Geplaatst op 15-09-2009 00:09 door Marije
Categorieën: Intrathecale Baclofenpomp bij HSP

2 weken geleden nog maar, kregen we bericht dat er voor onze lieverd Pleun een plaatsje vrij was om de baclofen pomp te plaatsen afgelopen donderdag 9 september. We hadden net een week de tijd om alles rondom de ziekenhuisopname te regelen. Maar goed, het positieve is dan weer dat we niet al te lang de tijd hadden ons vooraf druk te gaan maken over de operatie.

Ook deze operatie is ons weer alleszins meegevallen. Het verbaast ons keer op keer hoe snel zo'n klein ventje zo snel herstelt. De operatie duurde in totaal nog geen anderhalf uur. Het pompje is geplaatst in zijn linker onderbuik. Dit in verband met een mogelijke toekomstige ontstoken blinde darm (rechts). Daar kunnen ze dan nog eenvoudig bij. Het slangetje van de pomp loopt via zijn linkerzij naar het ruggemerg. In de rug is ook een incisie gemaakt, waarna ze met een naald het ruggemerg bereiken en zo het slangetje naar het ruggemerg hebben geleid. Vervolgens verbinden ze het slangetje weer met de pomp aan de voorzijde en sluiten ze de wonden.

De eerste 2 dagen moest hij volledig plat in bed blijven liggen. Liefst op de rug, maar zijlig mag ook, als hij zijn bovenlijf en hoofd maar niet kon oprichten. Het is belangrijk de eerste 48 uur te blijven liggen, omdat zo het gaatje in het ruggemerg kan dichten. Als het nog niet dicht is, kan er hersenvocht lekken uit het gaatje in de rug wat zich uit in knallende hoofdpijn en misselijkheid. Onze vent is keurig 2 dagen blijven liggen. Het leek me een grote opgave voor een kind van (bijna) 6 jaar, maar wat paste hij zich goed aan. Zaterdag mocht hij voorzichtig proberen om het bedhoofd te verhogen, dit deden we in etappes van 10 cm en met tussenpozen van ca. 1 uur. Gelukkig bleef hoofdpijn en misselijkheid uit. Op zondag mocht hij al rechtop in de rolstoel zitten en ook dit verliep zonder problemen.

Vandaag, maandag, moest er nog een foto gemaakt worden ter controle van de lokatie van het slangetje. Er was een kans dat het slangetje weer iets gezakt zou zijn. Maar gelukkig zat deze nog keurig op zijn plaats en ... mochten we alweer naar huis! Sinds maandag avond zijn we weer thuis en morgen gaan we genieten van ... zijn 6e verjaardag!

De dosering van de pomp wordt gedurende de ziekenhuisopname voorzichtig opgeschroefd. Dat doen ze met een soort "afstandsbediening" die ze net even boven de lokatie van de pomp houden. In de pomp zit een begindosering van 250 microgram/mililiter baclofen. Toen hij uit de ok kwam, was de pomp gedoseerd om 60 microgram per 24 uur af te geven. Dit bleek nog (veel) te weinig. Vrijdag werd dit opgehoogd naar 80 microgram, zaterdag naar 90, zondag naar 100 en vandaag naar 110 microgram. We merken de ontspanning zichtbaar in zijn onderbenen. Voor het eerst in zijn leven trok Pleun zijn knie omhoog, iets wat onmogelijk was zonder pomp met de spasticiteit die hij had. Hij zit eindelijk zonder spalken met afgeplatte voetjes op de voetenplank van zijn stoel. Iets wat hem voorheen ook niet lukte, dan staken zijn voeten altijd in de lucht boven de plank. We zijn er nog niet helemaal met de dosering en zullen de komende tijd nog frequent naar de revalidatiepoli moeten om de dosering optimaal te laten zijn. Maar alle positieve effecten die we tijdens de proefbehandeling afgelopen januari hebben ervaren, beginnen weer langzaam aan terug te komen.

We weten nu al zeker: dit was een operatie die onze vent een meer ontspannen leven zal geven met alle positieve effecten erbij!

Tot de volgende weblog-keer!



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Cartier Tank Louis Replica,Cartier Tank Louis Replica
Cartier Tank Solo Replica,Cartier Tank Solo Replica
Chopard Happy Beach Replica,Chopard Happy Beach Replica
Chopard Happy Day Clock Replica,Chopard Happy Day Clock Replica
Chopard Happy Diamonds Replica,Chopard Happy Diamonds Replica
Chopard Happy Spirit Replica,Chopard Happy Spirit Replica
Chopard Happy Sport Replica,Chopard Happy Sport Replica
Chopard Happy Sport Edition Replica,Chopard Happy Sport Edition Replica
Chopard Happy Sport Oval Replica,Chopard Happy Sport Oval Replica
Chopard Happy Sport Round Replica,Chopard Happy Sport Round Replica
Chopard Happy Sport Square Replica,Chopard Happy Sport Square Replica
Chopard Happy Sport XL Replica,Chopard Happy Sport XL Replica
Chopard Happy Sun Watch Replica,Chopard Happy Sun Watch Replica
Chopard Happy Twelve Replica,Chopard Happy Twelve Replica
Chopard LUC Pro One Replica,Chopard LUC Pro One Replica
Chopard Mille Miglia Replica,Chopard Mille Miglia Replica
Chopard Mille Miglia Gran Turismo Replica,Chopard Mille Miglia Gran Turismo Replica
Chopard Mille Miglia GT XL Replica,Chopard Mille Miglia GT XL Replica
Chopard Mille Miglia Limited Replica,Chopard Mille Miglia Limited Replica
Chopard Two O Ten Replica,Chopard Two O Ten Replica
Chopard Classic Replica,Chopard Classic Replica
Hublot Big Bang Replica,Hublot Big Bang Replica
Hublot Big Bang 38mm Replica,Hublot Big Bang 38mm Replica
Hublot Big Bang 41mm Replica,Hublot Big Bang 41mm Replica
Hublot Big Bang 44mm Replica,Hublot Big Bang 44mm Replica
Hublot Big Bang King 48mm Replica,Hublot Big Bang King 48mm Replica
Hublot Big Bang Tutti Frutti Replica,Hublot Big Bang Tutti Frutti Replica
Hublot Classic Fusion Replica,Hublot Classic Fusion Replica
Hublot Limited Editions Replica,Hublot Limited Editions Replica
Hublot Ceramic Replica,Hublot Ceramic Replica
Hublot Diamonds Replica,Hublot Diamonds Replica
Hublot Gold Replica,Hublot Gold Replica
Hublot Automatic Replica,Hublot Automatic Replica
Hublot Quartz Replica,Hublot Quartz Replica
Hublot Mens Replica,Hublot Mens Replica
Hublot Womens Replica,Hublot Womens Replica
Hublot Rubber Replica,Hublot Rubber Replica
Hublot Black Replica,Hublot Black Replica
Hublot Strap Replica,Hublot Strap Replica
IWC Aquatimer Replica,IWC Aquatimer Replica
IWC Black Replica,IWC Black Replica
IWC Ceramic Replica,IWC Ceramic Replica
IWC Da Vinci Replica,IWC Da Vinci Replica
IWC Gold Replica,IWC Gold Replica
IWC Ingenieur Replica,IWC Ingenieur Replica
IWC Pilots Replica,IWC Pilots Replica
IWC Portofino Replica,IWC Portofino Replica
IWC Portuguese Replica,IWC Portuguese Replica
IWC Rubber Replica,IWC Rubber Replica
IWC Strap Replica,IWC Strap Replica
IWC Spitfire Replica,IWC Spitfire Replica
Jaeger LeCoultre Amvox Replica,Jaeger LeCoultre Amvox Replica
Jaeger LeCoultre Duometre and Chronograph Replica,Jaeger LeCoultre Duometre and Chronograph Replica
Jaeger LeCoultre Master Calendar Replica,Jaeger LeCoultre Master Calendar Replica
Jaeger LeCoultre Master Compressor Replica,Jaeger LeCoultre Master Compressor Replica
Jaeger LeCoultre Master Control Automatic Replica,Jaeger LeCoultre Master Control Automatic Replica
Jaeger LeCoultre Master Dual Time Replica,Jaeger LeCoultre Master Dual Time Replica
Jaeger LeCoultre Master Eight Days Replica,Jaeger LeCoultre Master Eight Days Replica
Jaeger LeCoultre Master Geographic Replica,Jaeger LeCoultre Master Geographic Replica
Jaeger LeCoultre Master Grand Tourbillon Replica,Jaeger LeCoultre Master Grand Tourbillon Replica
Jaeger LeCoultre Master Grande Reveil Replica,Jaeger LeCoultre Master Grande Reveil Replica
Jaeger LeCoultre Master Grande Ultra Thin Replica,Jaeger LeCoultre Master Grande Ultra Thin Replica
Jaeger LeCoultre Master Hometime Replica,Jaeger LeCoultre Master Hometime Replica
Jaeger LeCoultre Master Reserve de Marche Replica,Jaeger LeCoultre Master Reserve de Marche Replica
Jaeger LeCoultre Master Tourbillon Replica,Jaeger LeCoultre Master Tourbillon Replica
Jaeger LeCoultre Master Ultra Thin Replica,Jaeger LeCoultre Master Ultra Thin Replica
Jaeger LeCoultre Master World Geographic Replica,Jaeger LeCoultre Master World Geographic Replica
Jaeger LeCoultre Reverso Replica,Jaeger LeCoultre Reverso Replica
Jaeger LeCoultre Rendez Vous Replica,Jaeger LeCoultre Rendez Vous Replica
Jaeger LeCoultre Reverso Duo Replica,Jaeger LeCoultre Reverso Duo Replica
Jaeger LeCoultre Reverso Lady Replica,Jaeger LeCoultre Reverso Lady Replica
Jaeger LeCoultre Reverso Classique Replica,Jaeger LeCoultre Reverso Classique Replica
Jaeger LeCoultre Reverso Duetto Duo Replica,Jaeger LeCoultre Reverso Duetto Duo Replica
Jaeger LeCoultre Reverso Grand 976 Replica,Jaeger LeCoultre Reverso Grand 976 Replica
Jaeger LeCoultre Reverso Grand Duodate Replica,Jaeger LeCoultre Reverso Grand Duodate Replica
Jaeger LeCoultre Reverso Grande Automatique Replica,Jaeger LeCoultre Reverso Grande Automatique Replica
Jaeger LeCoultre Reverso Grande Date Replica,Jaeger LeCoultre Reverso Grande Date Replica
Jaeger LeCoultre Reverso Grande Sun Moon Replica,Jaeger LeCoultre Reverso Grande Sun Moon Replica
Jaeger LeCoultre Reverso Squadra Chrono Replica,Jaeger LeCoultre Reverso Squadra Chrono Replica
Jaeger LeCoultre Reverso Squadra Classic Replica,Jaeger LeCoultre Reverso Squadra Classic Replica
Jaeger LeCoultre Reverso Squadra GMT Replica,Jaeger LeCoultre Reverso Squadra GMT Replica
Jaeger LeCoultre Reverso Squadra Hometime Replica,Jaeger LeCoultre Reverso Squadra Hometime Replica
Longines BelleArti Replica,Longines BelleArti Replica
Longines Clous De Paris Replica,Longines Clous De Paris Replica
Longines Conquest Replica,Longines Conquest Replica
Longines Dolce Vita Replica,Longines Dolce Vita Replica
Longines Evidenza Replica,Longines Evidenza Replica
Longines Heritage Replica,Longines Heritage Replica
Longines Hydro Conquest Replica,Longines Hydro Conquest Replica
Longines Lungomare Replica,Longines Lungomare Replica
Longines Master Collection Replica,Longines Master Collection Replica
Longines Master Moonphase Replica,Longines Master Moonphase Replica
Longines Prestige Replica,Longines Prestige Replica
Longines Automatic Replica,Longines Automatic Replica
Longines Quartz Replica,Longines Quartz Replica
Longines Diamonds Replica,Longines Diamonds Replica
Longines Leather Replica,Longines Leather Replica
Panerai Ferrari Replica,Panerai Ferrari Replica
Panerai Historic Replica,Panerai Historic Replica
Panerai Luminor Replica,Panerai Luminor Replica
Panerai Luminor 1950 Replica,Panerai Luminor 1950 Replica
Panerai Luminor Base Replica,Panerai Luminor Base Replica
Panerai Luminor GMT Replica,Panerai Luminor GMT Replica
Panerai Luminor Marina Replica,Panerai Luminor Marina Replica
Panerai Radiomir Replica,Panerai Radiomir Replica
Panerai Radiomir GMT Replica,Panerai Radiomir GMT Replica
Panerai Tourbillon Replica,Panerai Tourbillon Replica
Patek Philippe Aquanaut Replica,Patek Philippe Aquanaut Replica
Patek Philippe Calatrava Replica,Patek Philippe Calatrava Replica
Patek Philippe Calendar Replica,Patek Philippe Calendar Replica
Patek Philippe Classic Replica,Patek Philippe Classic Replica
Patek Philippe Gondolo Replica,Patek Philippe Gondolo Replica
Patek Philippe Nautilus Replica,Patek Philippe Nautilus Replica
Patek Philippe Automatic Replica,Patek Philippe Automatic Replica
Patek Philippe Mens Replica,Patek Philippe Mens Replica
Patek Philippe Quartz Replica,Patek Philippe Quartz Replica
Patek Philippe Rubber Replica,Patek Philippe Rubber Replica
Patek Philippe Strap Replica,Patek Philippe Strap Replica
Patek Philippe Twenty 4 Replica,Patek Philippe Twenty 4 Replica
Patek Philippe Sky Moon Replica,Patek Philippe Sky Moon Replica
Patek Philippe Split Chrono Replica,Patek Philippe Split Chrono Replica
Patek Philippe World Time Replica,Patek Philippe World Time Replica
Rado Anatom Jubile Replica,Rado Anatom Jubile Replica
Rado Original Replica,Rado Original Replica
Rado Sintra Replica,Rado Sintra Replica
Rado Sintra Midi Replica,Rado Sintra Midi Replica
Rado Thinline Replica,Rado Thinline Replica
Rado TRUE Replica,Rado TRUE Replica
Rado Ceramica Replica,Rado Ceramica Replica
Rado Ceramica XL Replica,Rado Ceramica XL Replica
Rado Coupole Replica,Rado Coupole Replica
Rado Integral Replica,Rado Integral Replica
Rado Centrix Replica,Rado Centrix Replica
Rado Integral Chrono Maxi Replica,Rado Integral Chrono Maxi Replica
Rado Integral Jubile Replica,Rado Integral Jubile Replica
Rado Integral Super Jubile Replica,Rado Integral Super Jubile Replica
Rado Original Chronograph Replica,Rado Original Chronograph Replica
Rado Original Jubile Replica,Rado Original Jubile Replica
Rado Sintra Jubile Replica,Rado Sintra Jubile Replica
Rado Sintra Super Jubile Replica,Rado Sintra Super Jubile Replica
Rado V10K Replica,Rado V10K Replica
TAG Heuer Aquaracer Replica,TAG Heuer Aquaracer Replica
TAG Heuer Automatic Replica,TAG Heuer Automatic Replica
TAG Heuer Black Replica,TAG Heuer Black Replica
TAG Heuer Carrera Replica,TAG Heuer Carrera Replica
TAG Heuer Ceramic Replica,TAG Heuer Ceramic Replica
TAG Heuer Diamonds Replica,TAG Heuer Diamonds Replica
TAG Heuer Formula One Replica,TAG Heuer Formula One Replica
TAG Heuer Gold Replica,TAG Heuer Gold Replica
TAG Heuer Golf Replica,TAG Heuer Golf Replica
TAG Heuer Lincoln Replica,TAG Heuer Lincoln Replica
TAG Heuer Monaco Replica,TAG Heuer Monaco Replica
TAG Heuer Quartz Replica,TAG Heuer Quartz Replica
TAG Heuer Rubber Replica,TAG Heuer Rubber Replica
TAG Heuer SLR Replica,TAG Heuer SLR Replica
Ulysse Nardin Classico Replica,Ulysse Nardin Classico Replica
Ulysse Nardin Dual Time Replica,Ulysse Nardin Dual Time Replica
Ulysse Nardin Executive Dual Time Replica,Ulysse Nardin Executive Dual Time Replica
Ulysse Nardin Limited Edition Replica,Ulysse Nardin Limited Edition Replica
Ulysse Nardin Maxi Marine Replica,Ulysse Nardin Maxi Marine Replica
Ulysse Nardin Maxi Marine Chrono Replica,Ulysse Nardin Maxi Marine Chrono Replica
Ulysse Nardin Maxi Marine Diver Replica,Ulysse Nardin Maxi Marine Diver Replica
Ulysse Nardin Michelangelo Gigante Replica,Ulysse Nardin Michelangelo Gigante Replica
Ulysse Nardin Michelangelo UTC Replica,Ulysse Nardin Michelangelo UTC Replica
Ulysse Nardin Quadrato Dual Time Replica,Ulysse Nardin Quadrato Dual Time Replica
Ulysse Nardin Royal Blue Tourbillon Replica,Ulysse Nardin Royal Blue Tourbillon Replica
Ulysse Nardin Sonata Replica,Ulysse Nardin Sonata Replica
Ulysse Nardin Ceramic Replica,Ulysse Nardin Ceramic Replica
Ulysse Nardin Diamonds Replica,Ulysse Nardin Diamonds Replica
Ulysse Nardin Gold Replica,Ulysse Nardin Gold Replica
Ulysse Nardin Automatic Replica,Ulysse Nardin Automatic Replica
Ulysse Nardin Mens Replica,Ulysse Nardin Mens Replica
Ulysse Nardin Rubber Replica,Ulysse Nardin Rubber Replica
Ulysse Nardin Black Replica,Ulysse Nardin Black Replica
Ulysse Nardin Strap Replica,Ulysse Nardin Strap Replica
Vacheron Constantin 1972 Replica,Vacheron Constantin 1972 Replica
Vacheron Constantin Automatic Replica,Vacheron Constantin Automatic Replica
Vacheron Constantin Black Replica,Vacheron Constantin Black Replica
Vacheron Constantin Diamonds Replica,Vacheron Constantin Diamonds Replica
Vacheron Constantin Gold Replica,Vacheron Constantin Gold Replica
Vacheron Constantin History masterpiece Replica,Vacheron Constantin History masterpiece Replica
Vacheron Constantin Malta Replica,Vacheron Constantin Malta Replica
Vacheron Constantin Metiers Dart Art Masters Replica,Vacheron Constantin Metiers Dart Art Masters Replica
Vacheron Constantin Once a Overseas Replica,Vacheron Constantin Once a Overseas Replica
Vacheron Constantin Patrimony Toledo 1952 Replica,Vacheron Constantin Patrimony Toledo 1952 Replica
Vacheron Constantin Quai De L lle Complex Replica,Vacheron Constantin Quai De L lle Complex Replica
Vacheron Constantin Quartz Replica,Vacheron Constantin Quartz Replica
Vacheron Constantin Rubber Replica,Vacheron Constantin Rubber Replica
Vacheron Constantin Strap Replica,Vacheron Constantin Strap Replica
Vacheron Constantin timepieces Replica,Vacheron Constantin timepieces Replica
a lange sohne replica,a lange sohne replica
armani replica,armani replica
audemars piguet replica,audemars piguet replica
bell ross replica,bell ross replica
breitling replica,breitling replica
cartier replica,cartier replica
chopard replica,chopard replica
hublot replica,hublot replica
iwc replica,iwc replica
jaeger jecoultre replica,jaeger jecoultre replica
longines replica,longines replica
panerai replica,panerai replica
patek philippe replica,patek philippe replica
rado replica,rado replica
tag heuer replica,tag heuer replica
ulysse nardin replica,ulysse nardin replica
vacheron constantin replica,vacheron constantin replica
Geplaatst op 09-09-2016 04:08 door replica watch


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