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funschooler5
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Thanks everyone. I did have the nurse bring me a pump, but it's just a hand one so I haven't been able to get a lot of milk but I'll keep trying. DH called and for me a hotel room so I think I'll try there. They do have a lactation room but I've been just sitting in the corner pumping.

 

I will try to contact a social worker. It's difficult because I don't really want to say any of this in front of DH. He's been very emotional (understandably) and he says that feels like he's ruining everyone's lives. I keep reminding him that this is short term, that he needs to concentrate on getting well.

 

Both of our families live in our town and they helped a lot after his last hospital visit...cleaning, babysitting, and staying with us. But they have to go home eventually and we have to learn to deal with this disease as a family. The problem is that there is no "normal." He'll be ok one day (no pain, able to walk to the bathroom) and one little thing like eating the wrong food (we figured out salad does a number on him) and he'll be in serious pain or have to be hospitalized.

 

It's just really hard being away from the kids and everyone right now. I'm hoping that the university hospital (where he would be getting a transplant) has better lodging for kids.

 

Joanne thank you ::hugs:: ::hugs:: ::hugs:: I know you're going through the same thing. How do you do it working several jobs?? This is such a horrendous disease. So many ups and downs. I will pm you soon.

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:grouphug: prayers sent and more :grouphug:

 

Have you explored the possibility of one of the family members (DH's father, mother, siblings) being a donor for him? The liver regenerates, so he would only need a portion of a donor's liver. You may be able to bypass "the list" this way.

 

 

"It" doesn't work quite like that.

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Well it looks like I'm going to be seeing my baby after all, and DD15. After I last posted I fell asleep and woke up and threw up twice. I picked up a thermometer and some soup and went to the hotel to rest. My temp was 100.7 so they don't want me in the room with DH. I fell asleep until 6pm and my breasts were engorged...no way I could pump them now. My dad is going to bring the baby and my oldest daughter to me, since I won't be able to go to the hospital to visit him for awhile now. I guess the baby was throwing up last night too, so I definitely want her nursing. Going to get a mask for older DD and she will be getting a flu shot at the hospital. She was with me and the baby most of the week so I assumed she's already been exposed but better safe than sorry.

 

Ugh not the way I wanted to see them but so looking forward to it. Apparently DH's attending dr was throwing up today too.i guess we don't actually know if it's the flu or some other bug, but poor DH feels terrible about us all being exposed to it. I wish he could stop worrying about that. His electrolytes are back down again so they are going to back off on the Lactulose (a laxative they use to treat his confusion). I wish the poor guy could have one day without something bad happening. :(

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I hope you feel better. I am glad though you got a chance to rest even though it is because you are sick!

 

Social workers have to deal with emotional patients all the time. Emotional everybody! You can share your concerns with the s.w. about your dh's emotional state and she/he can be discrete about planning. You don't have to plan right there in front of dh, in other words.

 

Feel better!

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:grouphug: prayers sent and more :grouphug:

 

Have you explored the possibility of one of the family members (DH's father, mother, siblings) being a donor for him? The liver regenerates, so he would only need a portion of a donor's liver. You may be able to bypass "the list" this way.

 

Yes! A woman I know did this for a friend of hers. It turned out she was a compatible donor. She gave 2/3 of her liver and kept 1/3 (I am pretty sure that is accurate and not reversed)! But she now has a full liver back and her friend has a fully functioning liver of her own!

 

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug: You really are going through a lot. Are you allowed to keep the baby with you in the hospital during the day?

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