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 #.

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.

Nothing new. More tests, we have a dentist's appointment, an MRI, a psych eval and an appointment to drain the acites this week. She is feeling good with no major issues. She does like to talk, so feel free to give her a call!

We met Jayme's liver team yesterday and they rock! Her hepatologist, Dr. Franco came highly recommended by our med student home teacher and I can see why. Everyone in his office was so nice with Jayme and we met with the transplant coordinator, the physician's assistant, and his nurse. They truly are a team. They had already discussed her case on Monday (thanks to Mike for giving them the heads up and getting the Colorado records sent over) and were all up to date. Her doctor is very much the get down to business type. He came in and in a very nice way quickly explained why she is so tired (low blood pressure due to dehydration because of all the water pills they had her on), what needed to be done to get on the list and how the list works. Where you are placed on the list is dependant upon a score, which is determined by 3 tests. I don't remember right off what they are, but she hadn't had them yet, so they couldn't really speculate where she would be. They were all so nice and competent! It is amazing what a difference that combination can make. There are about a million tests that she has to complete before getting on the list. They want to make sure that there are no little things that are going to flare up when she is immuno-supressed after the operation. She has to get a pap, mammogram (lucky her), dental exam, colonoscopy (again, lucky her), upper GI scope, heart stress test, lung test, bone density test, CT scans and more. The next few weeks we will be practically living at the hospital. We are lucky that it is so close and that we are able to do everything there.

She is feeling a lot better now that she has gone off the water pills. It's a good thing, because she is going to need her strength to get through all this testing!

Today I got a letter stating that Jayme's Wisconsin Medicaid has kicked in effective Aug 1. That means that I can start setting up the appointments that she needs before she can get on the list and we can get the ball rolling on all the other testing that will need to be done. Hooray!!!

Otherwise, things are going well. She is feeling very tired, but in good spirits. They have a pericentisis lab here at the hospital and she was able to go in the other day and get 6 liters of acities drained off. It only took an hour or so, which is great because she said that in CO it would take all day.

She has been reading a lot and catching up with her phone calls. Any good book recomendations? She is almost done with the Eragon books. Maybe we will try Harry Potter next.

Keep her in your prayers!

Jayme came home last Friday and has been doing well here. Her incision is healing nicely and yesterday she even felt well enough to come to church with us. The social workers at the hospital are working on getting her WI Medicaid backdated to Aug 1 when she got here. It is driving me crazy not to know what is going on or to be able to take care of it myself, but they have assured me that there is nothing else I can do. It will for sure kick in Sep 1 so I am just waiting to hear back on when I can start scheduling appointments for her. She needs to go to a dentist before she can get on the list and we also need to find her a primary care physician to oversee everything. Once that happens, we should be able to move forward with all the testing for a transplant.

Still in the hospital... Feeling better each day. The social workers here are great. They are trying to clear up the Medicaid mess for this month, which is nice, because that means I don't have to:). We'll see how that works out. The transplant team has been working with Jayme. The psychiatrist has been doing some psych testing and the social worker interviewed me and Jayme to check out her support system and make sure that she would do ok with the liver. Who knew there was so much into just getting a new liver? Her Medicaid will kick in for sure Sep 1 and the transplant social worker said that with how sick she is, they should be able to get Jayme on the list within a couple weeks of the Medicaid kicking in. So, as long as all the evaluations and medical tests work out, she should be on the list by the middle of September! They just performed their 27th liver transplant of the year, so that averages out to be about 3 a month. It varies of course, but I would say that the odds are fairly good. Without being overly optimistic, I think that as long as Jayme hangs on long enough there may be a new liver in store for her.
Carter would be excited. He is always telling her that he is going to get her a new liver. It's really cute. He prays for her disease to go away all the time. He and Grandma have really hit it off. He will just hop up on the bed and chat with her about anything and everything. It works out though; she's a captive audience and he keeps her company. I think it's good for both of them.

Jayme is in the hospital still. She went in on Sunday night because her incision started bleeding. That turned out to be ok, but I think they were surprised at how sick she was in general. The toxins have been building up, so she got a little loopy yesterday, but is doing much better today. There was some concern that her acites was infected, but it turned out to be ok. They seem to really be taking great care of her here. She has already been seen a number of times by the hepatologist as well as a nephrologist. She will probably be in the hospital for another day or two as they make sure that she is stable and her blood pressure goes up (she has really low blood pressure, which I guess is normal for her, but has all of the doctors worried).

They are talking transplant and the social worker over transplants went to talk to her today and I will be talking to her as well. We called SSI today and got her benefits transferred here and they automatically signed her up for Medicaid (what a relief!). There is some confusion over getting coverage for this month, but we will get it all cleared up. They are really doing their best to get her ready for a transplant. I know that I am not alone in saying it's about time!!!

The surgery went well, and Jayme was discharged from the hospital this evening. She is feeling as well as can be expected and is ready for her flight tomorrow. We'll keep our fingers crossed that all will go well!

Feeling Better!

Jayme is feeling much better lately. Today she is working on sitting up so she will be ready for her flight. Her kidneys are back up and running, and the doctors say that if her kidneys shut down while she is on the transplant list they will do dialysis until she gets a liver and then the kidneys usually start working again. She is scheduled for her surgery tomorrow afternoon to close the hole in her belly button and tie off some bleeding veins in her throat.

Mike has been in touch with the transplant coordinator here in Milwaukee, Marie, who just happens to be Dr. Franco's nurse. He is the hepatologist that she will be seeing as long as all goes well - he comes highly recommended from our medical student home teacher. She was very frustrated with the level of care that Jayme has been receiving at University Hospital and seems motivated to help Jayme. She has already requested her records and is doing everything she can to get Jayme in to see Dr. Franco as soon as possible. He is on staff at Froedert, so he will be actively involved in the transplant process. Mike has done a great job getting the ball rolling with all of her health care out here, and I think we are all feeling confident that she will do well out here. We are just excited to have her finally get here (and for Mike to be home)!

Catch Up

As of today, the plan is to bring Jayme out to Milwaukee on Friday. Mike left this last Friday thinking that he would be returning with her tonight, but the situation with her belly button is worse than what we thought (she developed a hole in her peritoneum though her belly button that needs to be fixed). She is scheduled for surgery (basically just stitching it closed) on Tuesday and the doctors say she should be able to travel by Thursday and she may even be well enough to just come to our place instead of going straight to the hospital like we thought. We'll see though. All of our plans keep changing, so who knows. She is feeling better this past few days - I think it has really helped her to have Mike out there with her. They have been watching movies and hanging out at the hospital. In his spare time, Mike has been cleaning up the house, getting it ready to sell. According to the neighbor, it was just a drug house, so even though he has changed the locks, he is a little bit afraid to be there alone. I can't say I blame him.

Otherwise we are just doing whatever we can to get things ready to go for her. We went and picked up some medical supplies the other day and I am working on the Medicaid application. I have run into a little bit of a problem in that I don't know which name to put on the application:). SSI seems to have gone through, so she should have enough to pay the mortgage until the house sells, which is very nice.

Hopefully with SSI going through, we will be able to get her on Medicaid out here quickly so she can be evaluated for a liver transplant. I did look up the info on liver transplants out here vs. Denver and it looks good. The list is a lot shorter (80 or so vs. 475 or something like that). Froedert (the hospital she will be going to out here) has a 81% transplant rate vs. University of Denver's 17%. That makes us hopeful that she will have a much better chance of getting something out here. We will keep our fingers crossed!

A new blog is born!

I thought it would be nice for there to be a place where our family can go to check up on how Jayme/Phyllis is doing. So, here it is! I will do my best to keep it updated, and hopefully once we have her here and all settled in, she will do some posting as well.

So far, this is what we have: We have been working hard to get her room all set up. It has all been painted except for the doors, and the furniture is in (thanks to some friends for some donations and Craig's List for everything else). We are just waiting on a bed, which we should be getting once our friends get a new one.

I just bought plane tickets today for Mike to go out and pick her up on Friday the 25th. They will be coming back here on Sunday the 27th. Look for more after that!