All I want for Christmas

Do you want to know what I want for Christmas?????? Only one thing. I miss Patsy saying HI BABY when I say it to her. It was something that we used to do and it has been a long time since she has been able to say it back to me. She is starting to try to talk more and more and I believe that it is just a matter of time. It will be the greatest present anybody could give me.

Wait!!!! HOLY CRAP. I almost forgot to tell you the news for the day. Guess who ate a half of a waffle today with the fork and not the syringe????? I told you that she was doing better. Patsy shared a waffle and had some milk out of a glass today and that was wonderful. She also laughed out loud at me when I was teasing her about a little present she left me in her diaper. Did I say Holy crap???? Anyway, things are better, Christy is coming to give us a haircut today, there is new snow on the ground, the sun is poking through, and my love is eating with a fork. I think Christmas is already here. Thanks for riding on the journey with us, RAZ

And the answer is yes!!!!!!!

What does it take to make a grown man cry? Well, there must be something wrong with me because when Patsy answered a question with a simple "YES", I teared up a little. It has been a long time since she has been able to talk and now she is trying to answer every question and today she finally was able to. Holy Shocker!!!!!

We have had steady improvement since starting her on the meds from Denver. I am ordering another order Monday so that I have it before this stuff runs out. One noticeable change is that when I check her at night, she is always awake. I don't know if that is a good thing or bad but it has started since putting her on the meds from Denver. She used to fall asleep at around 11:00 and was hard to wake in the morning and then sleep all day. She still sleeps some during the day but things are certainly better.

The nurse is now coming 3 times a week instead of everyday. The bandage she was putting on Patsy would not stay on for more than a few hours show now she does a skin prep and sprays on a glue that keeps the bandage in place until she is ready to change it. Yesterday she told me that the sore was definitely on the mend. Her stats yesterday were great. Her heart rate was down to 71 and the oxygen levels stayed at 95.

I suppose that i am just a little optimistic but I would sure do like seeing her going in the right direction.

Keep up the prayers and thoughts and keep riding a long RAZ

Gobble Gobble !!!!!

Well, tomorrow is Thanksgiving and I took a minute today to reflect onwhat I am thankful for and I had a list a mile long. First and most important is that I get to spend another thanksgiving with the love of my life. Some said she wouldn't be here this year and I am sure glad that she is.

I am also very thankful for the wonderful family and friends that have helped us so much both in money and in support. I will never be able to repay that love but I will always remember it. I hope that you will recognize the blessings as they come your way.

Some of the little things I am thankful for-----patsy's oxygen level was 95 today and she hasn't been on oxygen for 3 days. Her heart rate was 75. HOLLY HEART RATE. That is down from a high of 129. Her lungs are now clear, and the infection that all most caused me to put her in the hospital is gone. The sore on her back side is starting to heal and she is doing much better. Some movement has returned to her arms and she is now moving her head alot more then she has for months. Patsy is still eating what I give her but still eating from a syringe. She still cannot talk but is starting to communicate more and more. Hard to explain but it is true.

The medicine that Carol and David (www.healerswhoshare) have Patsy on is working and things are reversing.

Lets hope they continue.

So you see, with good family and good friends and a great gal here that lets me take care of her, I have a lot to be thankful for and I count my blessings everday. Thanks for riding along with us RAZ

A new bed.

So I took a pic of Patsy's bed sore and I contemplated putting it on the blog. If it is here when you come to the blog, then I must have done so. If I do, it isn't meant to be anything other then a way to show people the road we are traveling. I am the one who made the mistake of not keeping her moving around and believe me, I feel terrible every time I see the sore. We are now focused 100 percent on getting the sore healed up.

The nurse stopped by today and more good news on her stats. Oxygen---95, heart rate---95, and her lungs are sounding great Patsy was given a bed bath today and she looks wonderful.

But the best news is that the nurse ordered a hospital bed and an air mattress and they were here by 1:00. The air mattress has three air chambers and the pump has air going 24/7. The chambers take turns being inflated and change every ten minutes. It is working great and it takes all the pressure off and continue to move it around. Maybe I will add a pic of the bed as well.

Anyway, I moved a few things around and was able to set the bed up here in the living room. It is great because I can be in the room with her day and night. That makes it better for me and her.

Not much more to add tonight. WAIT!!!! HOLLY CRAP!! I almost forgot to tell you that I fed Patsy some eggs and a yogurt today by using a spoon instead of the syringe. It was great to see her eating that way..

Okay, thanks for riding along with us, RAZ

Dang it!!!!!

YOU JUST GET ONE PROBLEM UNDER CONTROL AND ANOTHER ONE POPS UP!!!!!!

Some days it just seems like I should just go to bed and stay there. I would throw my hands in the air and quit but Patsy won't let me.

So here is the good news first!!! The nurse stopped by today and Patsy's stats are much, much better. Oxygen levels were 95 and she hasn't been on oxygen since last night for about two hours. Her blood pressure was way down from where it has been. Her pulse rate was 110 which is still a little higher then we want but a whole bunch better then it has been. The best news is that Patsy's lungs sound really clear and a week ago I was ready to put her in the hospital.

So what is next????? Carol went to Denver for training and she took a saliva sample with her and the head of the company did some testing on Patsy. He is 100 percent positive that Patsy does not have CJD. Dave and Carol believe that there was some issues that Patsy was having but that all of her problems were set off with toxins from the lye that we used in making the bio-diesel.

Dave has Patsy on a lot of things to clear her up. Is it to late??? He says not. Carol has been working on Pat and I would like to think that they have a handle on it. She is showing some signs of improvement already. just little things but they mean a lot to me. I gave her a yogurt today and a few bites of a waffle without the syringe. It would be great if she could eat meals again.

So, now for the bad!!!

Patsy has a bed sore on her tailbone that has become pretty serious. I have had her on her back to much because of the lung problem. That has created a problem. Now we are going to keep her on her side and get to work on clearing it up. Not going to be easy. The hospice people are bringing an air bed out tomorrow and that will help. I guess that it helps keep the body from being in one position to long.

Finally, the discussion of a feeding tube has popped up and the pros and cons are being weighed. I hope Patsy continues to improve so that a decision does not have to be made.

Thanks again for staying with us, RAZ

Will She bounce back?????

I'm back and so is Patsy!!! Back from where????? Okay, okay, here is the story. As you know, I got rid of the first hospice group that was here and it was the best decision I have made so far. The new hospice people are on board and they are great. Here is an example!!!!

I told you Patsy was very sick. Yesterday I called the nurse and Christy and ask them to come quick. Patsy was really bad and I needed to discuss with them what options we might have. I don't involve the rest of the family at this point because other then Thereasa and Katy and Carey, nobody else has been that involved with her care. Her stats were very low. Oxygen levels were 88 and they should be over 90. Her pulse was 129 and that should be under 100. Her lungs were full of crap and making her work way to hard. Her temp for the last week has been bouncing around 100 t0 103 and not coming down even with pills. She was a mess and the nurse said she was very sick. I asked the question. Do we need to put Patsy in the hospital. That was tough for me but I wanted to do what is best for Patsy. We discussed what we could accomplish if we put her there and it appears that the main thing would be an I. V. I thought for sure that the nurse would recommend the hospital but instead, she said that she could do an I.V. here if the doctor would approve it and that the care we are giving Patsy could not be matched in the Weiser hospital. Blew me away and I know the answer would not have been the same with the other provider.

So a call was made to the Doctor and he said that he would approve the I.V. but, he thought the antibiotic that we were giving her was just as good and said that we just need to stay with it one more day. So within an hour, we had an oxygen machine and tons of everything that we could need to help Patsy. They delivered it and we went to work. Everything from gloves to pads to diapers to body lotion.

Patsy says NOT YET!!!!

Today her lungs are almost clear, her oxygen level was 92 when we check it at 3:00. Her heart rate had dropped to 102. She was responding to us and awake. What a difference. She had a really good night and while I checked on her regularly, I didn't have to do much and was able to sleep a bit. They came and we gave her a bath today. For anybody that thinks Patsy would be happier some place other then her home, You should have been here today. She has told me when she could talk to please not let them put her in a nursing home. When ever someone comes along in those fancy uniforms, she goes into panic mode. That happened today!!!

She woke up to Debbie (her bath lady) and I had to step in and settler down and let her know that I was there and that we were not taking her anywhere. She settled down and we continue with a chuckle on our faces.

It make me feel good when I see her heart rate slow when I am holding her hand. She knows the love I have for her even in this mess she is in.

Carol is back from Denver but I will save that good news for another day soon.

We received a little cash and some gift cards in the mail today. If the people responsible for that are reading this, thank you so much. I need to give Carol $300.00 tomorrow to cover the testing that was done in Colorado. Every little bit helps.

To wrap up, Patsy is still sick but is doing much better tonight. We have her on oxygen sometimes and antibiotics, she has a bad bed sore on her hiny because we have had to have her up to keep her breathing. We now are addressing that. Please know that I love her and will continue to do what ever she needs to give her the best chance that she might have.

Thanks again for riding along, RAZ

Who ordered this and why!!!!!!

I have heard it said that when the going gets tough, the tough gets going. I once believed I was pretty tough but now have been knocked down a step or two.

First let me apologize for not keeping the blog up to date. I have been a mess and by the time I quit at night, well, I haven't been quitting at night. Patsy has had an infection and with that a temp that has been really hard for me to keep in check. She has been gurgling when she breaths. The hospice nurse believes that I may have aspirated her by feeding her with the syringe but i don't think so. Regardless, she had a build up of something in her bronchial tubes and that has now settled in her lunges. We are watching her close to make sure that she doesn't get worse.The nurse suggested that we put her on an antibiotic and I agreed. The high temp is kicking her tail. I have been checking her every 30 minutes and keeping cold cloths on her and Tylenol in her. That gives me about a 20 minute nap before the next round. Maybe that is why I was a grump yesterday. I KICKED THE HOSPICE PEOPLE OUT!!!!!!!

Ok, I will tell you that story. Every since they first started coming around, they have had the wrong attitude as far as I was concerned. They wanted to fill the rv with morphine and other drugs and instead of helping me with the needs I have for taking care of Patsy, It appeared to me that they wanted to dope her up and keep her that way until she dies. Yesterday was the last straw. They came in and checked on Patsy while I took a shower. When I came back to the RV, the nurse told me that Patsy had indicated to her that she was in pain. BULLCRAP!!!!!! There is no one that knows this lady better then I do and I ask her all the time if she needs pain pills and I would know if she did. But the trouble doesn't stop there. I was advised that we should put her on an antibiotic to help with the lung problem. I agreed and she said that she would call the order in. I got a phone call an hour or so later and said that they had a prescription that had been called in and that they would drop it off. They came to the door and told me that the medicine needed to be given to her every two hours and I started right away. I gave her a treatment at 1:00 and again at 3:00. But I noticed right away that I could not wake her up and she was unable to eat lunch.

The nurse call me at 4:00 and told me that the medicine had been called in but they were waiting for the Doctor to release it or something and that I could pick it up.

WHAT!!!!!! Then what the heck (notice I said heck, that is not the words I used yesterday) have I been giving her?????? After describing to her the medication, I found out that it was an anti-anxiety drug. WHAT!!!!!!! WHO ORDERED THAT AND WHY?????I only wish pat could show anxiety.

So, needless to say, I blew up and they received the bad end of two sleepless nights. I have a new provider who will be here at 4:00 today. My daughter Christy helped me by calling them. She informed them that I was not a very happy camper right now and that if they didn't think they could help me and do things the way I wanted, then they shouldn't come.

Did I mention Christy helping me??? I don't think I could have made it this far with out her.

So, the journey continues. Carol is in Denver getting training and they are the ones that gave us the anti CJD vibropathic. I hope to hear from her today or tomorrow. I really appreciate all the prayers and the coupons for Ensures that I have recieved. If anyone sees coupons for depends diapers, please clip them for me. Keeping riding along, RAZ

Pillows

Ok ya'll. You keep asking what can you do to help. Well Since Dad has been sitting Mom up more on the couch and in bed he needs pillows to prop her up. He said they don't need to be new pillows if you have any just sitting around and they don't need to be bed pillows either. Throw pillows for the couch are great. So anyone in the Boise area who wants to help, I'm in Nampa so we can meet up and I can get them to Dad. Thanks for every ones help and support it has meant so much to the whole Family.

More Grand Babies

Hi Everyone!

It's Carey. This isn't a post about Mom but Dad asked me if I would put this picture on here. Chad and I had another Baby. It makes 4 for us. He came Nov 9th and we went out to see Mom the next day. Carsyn is now 7, Corbyn is 3, Cole is almost 2 and now Little Cooper.

Cooper make a total of 20 Grand Kids for Mom and Dad.

Hospice Care????

Okay here is my report for tonight. It has been a hectic day. A good friend has help us get some hospice care and I spent the day with doing paper work and talking with some of the people that will be coming to help. One of the hospice workers turned out to be a friend that we have known for years. There is probably no one that we feel better about helping Patsy then her. She lit up like a Christmas tree when I told her that she was coming by. Now, I am not trying to pat myself on the back but they were surprised at the care that we were giving Patsy. That made me feel pretty good. They are going to come twice a week and do physical therapy on Patsy and another crew will come three times a week and give her a bed bath. The will take an enormous amount of stress away from me. They also will now provide me with the depends diapers that she wears and some medicines and creams that we use.

Patsy was clearly upset because she was afraid of what was going on. It took us some convincing to get her to understand that i am not leaving her or letting them take her away from me. While they were here, I again asked her if she wanted to move to a house or stay in our home (the bus). She convinced them where she wanted to be. Live or die, it will happen here.

Carey and Chad added another grandson to the family and I told Patsy that cooper had finally arrived. I wished I would have had a camera. I gigantic smile when I told her that Carey was coming over in the next day or so.

So Patsy is doing pretty good. I know she is doing better then a week ago. I don't know what next week will bring but she is doing okay for now. Her blood pressure was better, her lungs are doing good, her heart rate was good, her skin color is good, and she is very well hydrated. We are still waiting the results from Colorado, maybe tomorrow. I am positive that I am now getting enough food in her again. And the best part is that she seems more coherent lately. Like she understands more about what is going on. She still has little movement and is still being fed through a syringe. But she is eating a bunch and that is good.

So life continues and so do we. I used to pray for Patsy and still do but i also pray that I will not get sick or hurt so that I can continue to to be there for her. Thanks for riding along, RAZ

another day

Another day has come and gone. Things didn't change much today. She has been resting quite a bit and sometimes it is like she is awake but her eyes are closed. I will give her a drink and she drinks it down as if she was awake. She ate a bunch today and that was good.

I gave her a bath and washed her hair. Some girls came by and played there violins for her and she smiled. It has been a rough day for me. It is amazing how much time and work it takes to take care of Patsy. It seems like I just get done changing her and then it is time to make her something to eat, That always takes some doing. One reason is I am not a darn cook!!!! And then I have to fix the food so that I can get it down her. We are doing better now.

I love to hold her hand and she doesn't like to let go so I just sit with her sometimes for awhile.

Carol sent the samples to the guy in Colorado. He is the one that we got the fix for CJD disease from. He will look at it tomorrow and we will get his opinion. I really don't know what to do and sometimes it would sure be easy to say the best place for her would be somewhere besides here. But, I know that she would not get the care that I can still give her so for now she stays with me and I continue the journey. Thanks for riding along, RAZ

well pea!!!

Now don't be mad at me. I will tell you that story in a minute, but first let me tell you how much I enjoyed having Katy and Shailey here for a couple of weeks. I was able to make a little bit of money and Katy took care of mom and me while she was here. In fact, she has only been gone a couple of days and I am going nuts. Patsy smiled a lot at our granddaughter and that was great.

We started Patsy on the CJD medicine. Today she is up watching the game with me and I have seen her move her toes and hands a bit. I might just be grasping at straws but I want to remain positive.

So, don't be mad at me. Patsy has lost more weight. We tried everything we could and still she will not eat. Or should I say she will not open her mouth to eat. Well, we out smarted her. I now feed her with a syringe. It is working really well. It is a lot of work but I don't mind.I did have a problem once. I got a pea stuck in the end of the syringe. I was pushing to get the pea out and oh oh!!!

HOLY PEA ON THE CEILING!!!!! I do try hard.

So I went to the nursing home to get the syringes from Christy and I have decided to work even harder to keep my promise to her. The question I ask myself now is, if she doesn't get better, can I watch her until the end???? I hope so but lets hope see gets better.

Thanks again for riding along, RAZ

It's here

Is it possible to be really happy and sad at the same time??? Ok, here is the good and the bad. Lets do the bad first.

Patsy is not doing well and if things don't change soon, then I think her time with us is shorter than longer. It is a battle to get her to eat and she is sleeping more and more. She is done talking for the most part. Her arms and legs are about done.

So, how do I find any good. Well, I can!!!! We checked oxygen levels with a machine that Christy borrowed from work. They are good. Her heart beat is a little fast but that is not out of the norm for her. She still knows who we are and most of the time will even give us a response to our questions. Her body functions are still working and the diaper count continues.

I called Carol the other day to give her an update. And she decided to call Colorado and she if she could get another opinion. She told the people down there that she was working on a lady that was diagnosed with CJD disease. Guess what they said!!!!! THEY HAVE THE CURE FOR CJD DISEASE !!!!!!!! WHAT??????

Carol ordered it and I told her to have them overnight it to us. We got it today and I went over and got it the minute it came in. I started her on it tonight. Is it to late???? I don't know!!!!!!!