A Rough Evening

Hey everyone it's Carey tonight. Just wanted to write a quick update. Mom had a massive Seizure tonight. The Hospice Nurse gave her some kind of medication to keep her comfortable for the night but that's about all I know. I will have Dad write more about what happened in the next day or so when the nerves calm back down.

Carey

I guess we will do it!!!!

Well, it is official. Patsy will be discharged from Hospice by next Friday. It has been kind of an emotional day for me. While I am really happy that Patsy is doing better, I was not ready to make the change but it will be best for her.

So here is what I think is going to happen. By next week Hospice is going to move us to Home Health and they will take the bed back. Patsy doesn't meet the requirement for Home Health to provide a big bed but they will provide what they call an air overlay which is a thin air mattress that lays on top of the bed. That air mattress will still have an air pump and I assume it will help to move her around a bit. We will lose the diapers and wipes, but, we will still have somebody come and help give Patsy a bath and they are working on trying to keep Debbie but we don't know for sure. Patsy will also have a nurse assigned to her but it will be a different one then Denise. Bummer!!! But they will be able to keep getting her any meds that she might need. They will also provide a wheel chair that reclines and that is where they will probably be doing her therapy. I don't think that the new chair will fit through the opening to the bedroom. SOOOO, I will need to get her up in the mornings and put her in the wheel chair that i have here and then move her to the front of the rv and get her out of that chair and move her to the new chair. When I need to change her I will have to move her from the chair and to the couch. Maybe a little nap and then back to the hair. At night I will take her back to the back of the rv and put her to bed. We were thinking about setting up a hospital bed an then I would sleep some where but when I asked Patsy if she wanted me to set one up or put her back in her bed, she indicated her bad. So, that is what we are going to do.

I need to do a little work in the bedroom before this an all happen and I think Chad is coming this weekend to help me. I will have to rearrange the living room again when this all happens but such is life. On the road again so try to keep up, Raz

Now what the heck do I do!!!!

Well, I guess it is time to post again. Sorry for not keeping up.

I think Patsy has hit a little plateau. After a month of steady improvement, I think Patsy has leveled out just a bit. Not that she isn't doing okay, but just not doing much more. I called Carol and told her and so she went to work to try to find out why. Here is what she found.

I put some of the medicine that Patsy is taking on a cotton ball and put them in individual baggies. 10 to be exact. Then I did a new saliva sample from Patsy and put that in a bag. I took them to Carol on my way to the meeting last night and she worked them up. After testing last night, Carol called me to let me know what she found. She says that the meds are over working her body a bit and that explains why she seems tired and not as alert. Also, Patsy has what we thought was a blueish color on her fingers on her right hand. Denise first thought that maybe we had a circulation problem or and oxygen problem. After testing her, we found her oxygen levels to be great and her hands were warm so that didn't make much sense. After further examination, we decided that the color was more silver than blue. We also noticed that her finger nails were always dirty on that hand And I figure that it was because something was cleaning out of her body and it was coming out through her fingers. I know, you all think I am a little weird but I just tell it the way I see it.

Anyway, Carol thinks that it is all part of the body working to hard thing. So here is what we have decided to do. We are pulling Patsy off the stuff from denver and keeping her on the new stuff that Carol put together for Patsy last week. We will stay off of them until monday and then I will do another sample for her and take it over and test again and see where we are. I am willing to bet that by Monday her fingers have cleared up, we will see.

I new problem has entered our life or at least a decision that needs to be made soon. Patsy has been on hospice now for 60 days and is certified for 90 days. Denise is ready too discharge her when I am ready. What does that mean???? Well, Hospice is designed for end of life care and it has become apparent to her and to me that Patsy is not there. If we convert over to Home Health instead of Hospice, then we can get Patsy a speech therapist, and a physical therapist and start working on building her body and brain back. Sounds great right!!!! Well here is the problem. I will loose this bed possibly and will definitely loose the diapers and wipes and her bath gal and Denise as her nurse which I really like. Plus, it means putting her back in our bed and me having to wake up every hour and turn her. It also means that I will have to start taking her to therapy and that means moving her in and out of the bus. It also means I will have to find a different van because I don't think I can get her in and out of the little car I drive around. I guess I have gotten to soft. This last month has been easier on me and now it looks like I need to get back to work. I really don't know how I can afford to do all that but I just need to have a little faith I guess. Chad is working on getting my tranny in my pickup and I want to see if I can lift her up into that. I am so happy that she is doing better, I think.

It is not a decision that has to be made today but with in the next week or so and you will need to keep riding along on our journey with us. I may really need your prayers if I have to start taking her in and out for therapy. We see !!! RAZ

2 reports in one day

Well, that was a cool experience. at 8:30 I got Patsy changed and got her ready for breakfast. 9:00 she ate a nice breakfast of hot cereal, applesauce, and some ham. A bottle of Ensure and we were ready to face the day. Patsy doesn't eat real fast so it takes 30 to 40 minutes to feed her. I answered a few emails and phone calls and then at 10:30 I got Patsy ready for her massage. I think this is the first time she has been out of the RV for three months, maybe longer. I was able to get her dressed and her hair done and ready by 11:00 and the boys showed up and helped me load her into the van and away we went. Sue did a good job on Patsy and I think she really enjoyed it. I put her on her stomach for half of the time and she hasn't been on her stomach for a long time. It really seemed to help her.

On another note, I have started a vinyl cutting business. I was able to borrow enough for a vinyl cutter off of a couple of jobs that I have pre-sold. It is an opportunity to make a little extra money and still be here with Pat. It is something that Pat and I had planned to do on the road so I may as well get started now. I won't be able to go out and do sales at this point but the learning process will be something that I can do here.

So keep riding along with us on our journey, RAZ

RAZ

A quick note before we attempt to take Patsy for a massage. That ought to be interesting to say the least.

Yesterday I got a phone call from Carol and she said she had been doing some work up on Patsy and that she had some things for her to add to the meds from Denver. So I hopped in the car and headed over and got them. Last night I started her on them and WOW!!!! Now I don't know if it was the stuff Carol started her on or just a continuing of her progress but, when I woke her she was a whole bunch different today. She was actually laughing out loud and, she said RAZ for the first time in many, many, months. Holy Molly!!!!! I just don't think you understand what that means to me. We see if she still talks to me after her massage. I will undate you later. RAZ

What, no bandages!!!!

The good news today is that we have removed the bandages from Patsy and she is all healed. We will still put come cream on her to keep the moisture away and try to protect the area. Her temp and vitals are good today and she continues to move forward. I am going to have to move her bed back a bit to get the wheelchair out tomorrow when we take her for her massage. I'll make it work some how.

The cold has been a test for us but we are winning the battle. It is costing us about 30.00 a week but that isn't as bad as I thought it might be.

Patsy smiled and said Hi to Denise when she came today and that was wonderful. She continues to try to use her arms and hands.

So, the journey continues. Nothing but good news I think. Thanks again for being there for us and keep riding along, RAZ

A little lovin' is good!!!!

I had better do a post so that my cell phone drives me crazy. Sorry I have been a little under the weather for a couple of days.

Sunday was a bad day. Patsy had a fever all day and all night and I could not break it. I used wash rags with cold water and it was still a battle. Monday was better. Her fever finally broke and she felt better. The problem was that I felt like I had been bucked off a horse. Monday night I called Christy and asked her to come over and cook Patsy some dinner and I went to bed. My back has been killing me from all the lifting I am having to do. Tuesday, things were better for both of us.

Yesterday I worked all day getting some work done and at 5:00, I went to Boise for a club Board meeting. Keri came by and sat with Pat for a couple of hours and fed her dinner. It was nice to get out and Patsy really like Keri.

I talked with Carol and asked her if she was okay with us taking Patsy in for a full body massage. She thinks it would be a great thing so I scheduled an appointment for sat at 11:30. I asked Denise if she could get approval from Hospice to pay for it and she did. They will pay for two visits a month. It will be really interesting to watch that massage with Patsy always wanting to grab our arms as we work on her. The bigger challenge will be getting her out of the bus and into the car. The van that we were using last year doesn't have a heater and I don't know how we will get her into and out of the little station wagon. But I am really excited about helping her with a good massage.

I got a little lovin today!!!! I put Patsy over on the couch for an hour and then, OOOOPPPPPSSSS, the couch layed down into the bed. Now before you guys and gals go crazy with what ever you might be thinking, I will tell it was nothing like that. But, I did crawl up next to her and gently rolled her towards me and I rubbed her back and I got a few kisses. I tell this story because of what happened while I was holding her.

I asked her if she like me rubbing her back and to my surprise, she started to talk to me a bit. It was mainly yes and no and some mumbling but I found it interesting. It was the first time in months that I have been able to lay by her and hug her like that and it really was special and I think for both of us. I think it was easier to try to talk for some reason being that close and almost a whisper if that makes any sense.

Okay, enough of that. We are having sloppy joes tonight and it is time to get them started.I included the lastest pic of Patsys back side to show the progress. Denise said that we are in pretty good shape.