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 #.

Jayme went to the nursing home today. She gave us another scare yesterday. The doctor called in the afternoon saying that she was confused and they needed to do a tap on her belly to see if the acites was infected. I don't know what they found out, but they had her do a fast to clear everything out and she was feeling much better today. She was happy and chatty. I think the place that she went to is pretty nice, but she hasn't called yet with her number. As soon as I get it I will email/call.

I sent out an email and I guess I forgot to post here. Jayme went into the hospital last Tuesday. She had been really weak and when she went in for her MRI they told her that she was too sick for it and just admitted her. Her blood counts were really low and so they gave her some blood. The good thing about her being in the hospital is that they were able to get all of the testing done that they needed to for her to get on the list. Unfortunately, Dr. Franco doesn't feel that she is strong enough to get one right now. He wants her to go to a rehab center (read nursing home) for some intensive physical therapy. I haven't actually spoken with the doctor, but the length of stay there will depend on how she does with the physical therapy. I guess it could be anywhere from a couple of days to a couple of months. I am calling Dr. Franco tomorrow to see what else is going on and I will post more if anything comes up. In the meantime, she is very lonely in the hospital. I try to see her everyday, but it's hard with 2 kids who don't want to hang out in a hospital room. So give her a call if you can. Call me if you don't already have the number.