Jayme has decided to go on hospice care. She has stopped taking her meds and has decided that she is ready to die. She really wants to come home to die, but unfortunately it may not happen. I worry about what she will go through in the dying process and the impact that will have on my kids. Especially Carter, he is so impressionable. I don't want to have him witness her when she gets confused and starts yelling. I don't want him to think that death is a horrible thing. I want him to remember the grandma who was excited to see him, the grandma who would read to him. I don't want his last memory of her to be as she is dying. We are working hard right now to figure out a way to surround her with people who care as much as possible, but it's hard with just us.

She is very happy with her decision, and I think it will help us all accept it a little easier now that she has. She will be missed dearly, but I think she already is. This is not the Jayme who everyone knew and loved.

Jayme went to the hospital today. At first, she said she didn't want to go, but changed her mind after a few minutes. She has been refusing her meds today and hasn't been eating or drinking much. She said she was in pain, that she just didn't feel well. The doctors there sent her back to the nursing home because there really isn't much they can do for her. They basically said that she should be on hospice so that she can be comfortable. I don't want to sound harsh, but the reality is that she is dying. There is a consensus among all the doctors that have seen her that she is not a candidate for a liver transplant and without that any aggressive treatment would just prolong her misery. She has no quality of life right now. She sleeps all day. She does get happy when we go visit, but when we leave she goes back to sleep. She likes the lights off and the door shut. She doesn't leave her bed for anything. They stopped trying to do physical therapy a few weeks ago because she wasn't doing it. Unfortunately, she is having a hard time accepting this, which is understandable. I just know that it would be easier for everyone else to accept it if she would and I think the opposite is probably true too. I think a part of her doesn't want to let everyone else who is pushing so hard for her down. It has to be hard to tell your kids that you are tired and just want to be done.

Anyways, if you would like to talk to her, please call. I have found that if I call twice it allows her more time to find the phone and answer, so you may want to try that, and then leave a message on the second call.

This probably doesn't come as a surprise, and I know I have been wrong about this before, but I think we should probably be prepared for her to go fairly soon. Of course, she may prove me wrong and stick around - we'll see.

I haven't posted because there really hasn't been much to report. Mentally, Jayme is doing well, she is interacting well with us and seems to know what is going on. Physically, she is the same. She is weak and tired. She spends most of her day sleeping. Mike and I try to visit as often as possible, usually every day. We have brought her things to do, she just seems tired. She was discharged from physical therapy today because she wasn't doing anything with it. She can ask for it, but they aren't going to be coming into her room every day to be turned away.

In other news, everything went through with the sale of the house and we are just working with a lawyer and Social Security to figure out what we can do with the proceeds. We should have it all figured out soon.

I think that's all. Keep up the encouragement, you never know what impacy it may have.

It has been a while since I have posted, things get busy and I forget. Jayme is still in the nursing home/rehab. She was sent to the hospital when sh came down with a fever. At that time, she was doing worse than I have ever seen her. They had actually started with hospice care because it seemed to everyone that it was time. When she got the fever, we had her sent to the hospital just to be sure that we had done everything possible. After a few days in ICU she was transferred back to the regular unit and then back to the home. She is doing better mentally than I have seen her in a long time and her ascites isn't coming back as quickly, so whatever they did in the hospital and are doing in the home is working for her. She is still very weak, but she is sitting up for about an hour a day. She needs help with all of her daily activities, including eating. She isn't able to walk at all that we have seen. So it will be a long road, but she seems willing to do the physical therapy so she can come back home. We are hoping that she can do it; it would be great to have her strong enough to come back home.

She does have her phone and even though she rarely answers it, she does get the messages when we go visit. I know she enjoys hearing from everyone.

Jayme went to the new rehab place yesterday. This place is very nice and they seem genuinely concerned for her. They are encouraging her to sit up more and push herself. In general, though she doesn't seem to be doing well. She slept the whole time I was there and I don't think she is getting out of bed. In spite of what the doctors say, I don't know if she will make it much longer. She just seems to be getting weaker and weaker. She will have a phone tomorrow. Email me if you need the number.

We had a team meeting today with all of Jayme's doctors and the transplant team. It was basically to discuss where Jayme is at now and where she needs to be. It was actually very positive. The hepatologist actually told her that if she were to put forth the effort to get stronger, watch her diet and take her meds she could live for a while with a realtively good quality of life without a new liver. He said that even if she got on the list today that she wouldn't be anywhere near the top. Liver patients are categorized into 3 categories; A, B and C, with C being the worst. Jayme isn't even a C, she's a B. As sick as she is, she isn't as bad as she could be. What is making her so sick is the fact that she is allowing herself to get sicker. I think we are all frustrated that Jayme doesn't seem to be trying harder to fight. The doctors have been asking her to sit up for meals, use the commode instead of a bed pan, and sit in a chair for a little while and she hasn't been very willing to do that. However, the physical therapist got her to walk 150 feet today with a walker, which shows that she has the ability to do more than she is letting on. It was basically a wake up call for her. As it is, the doctors don't think that she is capable or willing to take care of herself post-transplant. It will be a lot of work, but she has to get moving if she is going to get better. She will need a lot of encouragement and support, but this is basically it. She has the power to basically chose which way her life will go.

Jayme is back in the hospital. She came home from the nursing home a week ago today. She was supposed to be there longer, but she hated it there and we weren't going to make her stay there when she hated it so much. Her roommate was horrible, there was no phone or TV (they said they were in the process of switching phone service and kept telling us that her phone would be installed anytime and her roommate wouldn't let her watch TV). She only got physical therapy once in the 5 days that she was there. Anyways, she has been deteriorating pretty rapidly. She isn't getting out of bed at all, she is wearing diapers now and eating all 3 meals in bed. Mike and I have tried our best to encourage her to get out of bed, but she is in pain and weak. She does have a physical therapist coming in 2-3 times a week, but so far all they have been able to do is work on standing up.

The testing is all complete for her to get on the list. However, those tests found a hole in her heart between the atriums. If she were to undergo the transplant surgery with this hole it could cause complications, including stroke. They want to go in and do an ultrasound through her esophagus, but before they can do that, they had to make sure she didn't have the verices in there. So they did a scope on Friday and banded the verices. This procedure knocked her out, though. Honestly, with her health as it is now, I don't see how she can make it through a cardiac procedure, even if they do go in with a catheter like they hope to. The doctors agree and are hoping that as she stays in the hospital she will get stronger and they will be able to proceed. Really, everything from here out depends on her getting stronger. It's frustrating though, because when the doctors tell her this, she gets defensive and says she doesn't like threats. I don't know if she understands that these aren't threats. Right now she wouldn't live through the transplant even if they had a liver for her.

Anyways, she always appreciates calls in the hospital, so I will send out an email as soon as I get her phone #.