Ordlista:

PEG = Perkutan Endoskopisk Gastrostomi = Knapp

NG-tube = NasoGastricTube = Nässond

MDS = Marguerite Dunitz-Scheer = Högst ansvarig läkare på NoTube.at

Svar 1

Dear Lina,

I was forwarded your message and am very sorry to hear that the hole after the removal of the PEG did not heal for apparently 5 months! Is it now properly closed and not leaking anymore??

Unfortunately we have seen some complications similar to this and know that a leaking hole is very uncomfortable and chronically irritating for a child, so this surely has influenced Signe's appetite and well being for probably quite a while.

Please give her a psychological and physical rehabilitation for another 2-3 weeks but then the situation must get gradually better again.

A NG tube is very much the last thing I would do, unless the situation becomes a medical emergency, because it might push her weight up again but probably at the cost of stopping self eating completely again. But when the decision for NGT is made, please use the tube effectively and give her a good and sufficient feed overnight and you will see how it affects her daytime appetite.

I hope Signe will be better soon and recover without needing a new tube.

Kindly MDS & Birgit from the NoTubeTeam

Svar 2

Dear Lina,
thank you for your request which our administration forwarded to me and prof Dunitz-Scheer. Of course we remember Signe very well and are keen to help her to avoid the reinsertion of the tube.

Signe really had bad luck with the surgery and the following infections.I discussed this with prof Dunitz today and at the moment with all that we know we don't recommend to put the tube back in. Signe will definitely suffer more from it than the benefits will be.

Our main recommendation at the moment is to enrich the food Signe eats with oil, cream, maltodextrin or any other kind of energy-booster. Please don't try to force Signe and let her eat whatever and whenever she wants, also during the night.

Kindly let us know how this works,

Kind regards,
Sabine and MDS

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Så låg där alltså lite vettiga svar i min mailbox och väntade trots allt. Jag hade inte gått in och kikat på några dagar och ärligt talat gett upp hoppet efter den första responsen. Efter allt de hjälp oss med gjorde det mig så besviken att de inte var mer intresserade av hur det gick för vår lilla Signe. Men… Det kan vara underbart att ha fel.

Jag ska fundera lite till och återkommer med mina tankar kring vad de skrev. Jag har svarat, berättat att Signe mår bättre, och tackat för att de hörde av sig. 

Min tro på mänskligheten är återupprättad. Jag har fått inte bara ett utan TVÅ svar från två olika läkare i Graz med anledning av mitt tidigare nödrop till dem. Jag återkommer med vad de skrev...