Well, so, another day that didnt go as we had hoped it would, but - TopicsExpress

Well, so, another day that didnt go as we had hoped it would, but we have to find a way around it. Hospice nurse says they wont support the blood transfusion. It looks to them more like repair than comfort. We talked about checking out and back in. She said she was told maybe once, but not on a long term basis with transfusions every 3-4 weeks. Our fear is that she would check out, and then they not let her back in. We need their help too bad to run that risk. I have had some non-lovers of Hospice voice an opinion, but they arent here day in and day out trying to work this problem. Hospice covers bases that we cant begin to. We dont have round the clock help. It a few of us doing 24 hour care, and they come in and do what we are too worn out to do. SO, yes we are glad to have Hospice. I respect your feelings if you dont care for them, but I need you to keep those to yourself because this is too hard to do without only positive support. So, we have to use our heads and figure out a new strategy. We talked about Shawn letting them do all wound care on her arm in an attempt to stop the huge blood loss that comes from the tumors if they are the least bit damaged. All it takes is one little stuck piece of gauze being pulled and away they go, as they are very vascular. So, Shawn let them help her take a shower and soak off the old bandage, and it was a huge success. Only a few drops of blood lost. Her job, now, is to lay in her chair and rest and make blood. Hopefully, she can refill what she has lost with fluids, iron, and lots of rest, and more prayers. If they can keep her from bleeding and she can make more, then things will get better. From our eyes, of course, things look different than from theirs. She needs blood to be comfortable and get enough oxygen to move about. But I cant expect them to know our Shawn and give to her what they dont give to anyone else. We will talk more with the Social Worker tomorrow about it, but for today, thats where we are. God, please stay with us all, give us strength, and let the happy moments continue to outweigh the sad. We talked to Jamie and John on the phone today, and listened to Hannah laugh at John. And Jamie and John saying I love juuu!! makes all things joyful. That makes this day go down as a happy one. Thanks, God!!

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