What can I say? You guys are amazing. Truly, truly some of the best people I've ever had the pleasure of talking to.
I think it's time for us to go home. I talked to the charge nurse here for quite some time - just she and I - and told her about Stephen's reluctance to use Hospice at this point. We talked about the option of home health care, and Stephen is on board. He's ready.
Stephen is so very swollen now, it's gotten much worse. His legs - from his thighs down- are about 4 times the normal size. An ultrasound was done to make sure there wasn't portal vein thrombosis, and a CT scan was also done around 6:00. No word from the ultrasound, but that was done this morning so I think if it was PVT then we would have heard by now. You can press your fingers into his legs and the indentations remain - like silly putty.
Stephen is getting another tap tomorrow for hopefully some relief and for diagnostic purposes – they want to see if the fluid is sterile or if it still has bacteria. We have a referral in place to speak to someone with Home Health Care, and hopefully that will go okay. I have heard very good things about Hospice but not much about experiences with home health. I hope It will be a positive move. I just need to get him home, in his surroundings, with our cats and birds and daughters and love and life. He hasn’t had a breath of fresh air in 10 days.
After his GI doc saw him today (this was the first time he had heard that Stephen was here), he said that he strongly felt like Stephen’s edema was from malnutrition. He said that his albumin levels were low and he wanted to put some sort of tube in Stephen’s nose and feed his large bowel directly. He’s very against TPN. He said anytime you can get food directly “in,” it’s so much better. I forgot the type of tube…a “Dof-Hop” or something like that. He can have this at home, so that won’t be a problem.
I was so very relieved to find someone who didn’t automatically say that Stephen’s swelling is all due to liver failure. Certainly, his bilirubin and jaundice are apparent signs of this, but honestly…intuitively – and of course I’m not a doctor- I think that the malnutrition comment was accurate and helpful. It’s thinking outside the box and I like that.
So I don’t know what to expect now, not sure how home health works, whether they’ll take him home in an ambulance, what to expect as far as how active the nurses will be In our home….all these questions. The one thing that I DO know is that it is absolutely the right decision to take my husband home now.
Wife to Stephen, dx 5/13/09; 45 yo
Stage IV w/numerous mets to liver, 2 to LNs
Colon resection 5/25/09
Folfox/Avastin, Folfiri/Avastin, Folfiri/Erbitux-progressed
Sir Spheres 2/2/2010
Admitted to hospital 4/23/2010
Passed away 5/09/2010