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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