Dit najaar vroeg ik meermaals via het blog aandacht voor de situatie van Hugo. Hij heeft zeer ernstige ME en diverse andere aandoeningen. Zijn mantelzorgers draaien dagen van 24/7 omdat hij buiten de boot viel qua huisvesting en passende zorg. Er werd een inzamelingsactie gehouden om zorg in te kunnen kopen. Hij kon voorlopig blijven wonen in het huis waar hij verblijft maar een passende oplossing is er nog steeds niet.

Zijn situatie bleef schrijnend en ingewikkeld. Zijn verzorgster Lisa geeft soms via de fb-pagina WE WANDER ASIA updates. Eergisteren meldde ze dat zijn situatie dermate achteruit was gegaan dat hij met de ambulance werd opgehaald. Voor een patiënt met zeer ernstige ME die niet normaal kan communiceren, is een ziekenhuis waar ze meestal weinig verstand hebben van zijn aandoeningen een hel van prikkels. Er werden uitgebreide onderzoeken gedaan en daarna werd hij weer naar huis gebracht in afwachting van de resultaten.

Toen de uitslagen bekend waren, moest hij onmiddellijk terug en werd per ambulance opgehaald. Hieronder het verhaal van Lisa zoals ze het publiceerde op de fb pagina WE WANDER ASIA. Hugo vecht voor zijn leven en heeft alle positieve kracht nodig die we hem kunnen sturen. In gedachten bij hem zijn, kaarsjes branden, bidden, wat jouw ding ook is, zet het nu in.

Lisa:

“Minutes after I published the previous post I got a call from the Emergency Room. They told me there was an ambulance on its way to pick Hugo up. He had to be hospitalized and taken into isolation immediately. Hugo urgently needed treatment.

His overnight blood culture showed that Hugo has got a threatening bacterial infection called Acinetobacter Calcoaceticus, also called a Superbug or Hospital-Aquired Infection. It’s a multidrug resistant bacteria () which can be fatal for those with bad health and a compromised immune system, which is the case for Hugo.

Hospital admission when dealing with very severe ME, being intolerant to sound, light and touch, can be extremely challenging and causes further deterioration most of the time. Stress arose as we heard he would be isolated all by himself, alone, in a new place, under fluorescent lights, with beeping machines and people walking in and out.

Luckily, with an indication from court that Hugo needs 24/7 care in proximity and with high exception from the hospital (as they cannot deliver that kind of intensive fulltime care and we do understand) I, Lisa, am placed in isolation with Hugo to proceed caregiving while Hugo is receiving treatment. Meanwhile Natasja moved our home-hospital-situation to the official hospital, and together with the kind nurses were doing the best we can. They even allowed us to cover all windows with plastic bags to darken the room and other adjustments has been made within their range of possibilities to meet Hugo’s very specific needs.

Although it is intense beyond words and we are all shocked and scared as hell, we are doing our very best and we’re extremely proud of Hugo for being such a warrior. I can’t even imagine how this must be for him to experience…

He’s currently receiving intravenous antibiotics, 3 times a day: an extra strong type that is rarely used in order to maintain its effectiveness in severe cases like this.

We hold our breath as all previous antibiotic treatments in the past years had to be aborted after 2 or 3 days, as Hugo’s body couldn’t tolerate it at all. We know we don’t have a choice if we want him to survive, because not treating this bacteria would be even more dangerous.

Meanwhile we’re researching the options for bacteriophages, which is not officially acknowledged by the Dutch/European health care, but shows to be extremely effective. It even got people out of coma that were already given up on. There is a good chance that this horrible bacteria will survive the current treatment, but of course we pray for a positive outcome.

Nobody can tell us how long Hugo needs treatment and thus will be in isolation, but you’ll hear from us soon.
Thank you from the bottom of our hearts for your support and love. What a blessing you all are!
Much love from us, all the way from this quarantine hospital room to the outside world!”

Voor het oorspronkelijke bericht zie hier.