Roller-Coaster!

DH was put on TPN for being malnourished while hospitalized. He has been home a week and we will be starting with our second home health care company tomorrow. The first nurse to come out didn't know a thing about TPN or a PICC line, she spent 3 hours here before I said enough is enough.  She kept making calls trying to find out "how to do it".  Why she was sent, I don't know. The second nurse from the same agency shook so bad, (from coffee she said), that I hated for her to approach DH with a needle! Hopefully, tomorrow will bring a knowledgeable professional! Although, she called me "kiddo" and "young-un" on the phone today. :(  We have been hooking up the TPN each night and every night it seems as if there is something new...air in the line, pump not operating properly, etc.  There are additives that have to be added to the TPN just before infusing, PICC line has to be flushed, etc., etc.  I consider myself a capable person, but I am finding this very stressful...to the point of feeling nauseous and faint. Part of that I am sure, is because the week prior to DH being hospitalized I was sick with a respiratory infection and asthma flare. I didn't eat properly the week he was in the hospital and now that he is home and on TPN, he doesn't have much appetite so I am not preparing food and eating as I am used to.  I told him today, maybe he will gain weight and I will lose!  The other part is probably because I am so angy it has come to this. Crohn's has stolen so much from us already! TPN is not something we really saw coming, but here we are.  New GI at university hospital is putting DH on Cimzia as he says Humira is no longer working. He told us that Humira loses 20% of it's effectiveness each year you are on it.  In that case, a whole lot of Humira was purchased & injected that didn't do any good.  DH has also had two occurrences of an abcess forming above his two abdominal fistulas.  New doc will be giving him a low dose antibiotic to try to keep it from reforming.  DH is adamant against another surgery and doc says he is so malnourished no surgeon would touch him right now anyway.  And so it goes...up and down, around and around.