Restless Night

Kevin started a patch for pain yesterday, it is good for 48 hours. It seems to help quite a bit. He says that he is in little to no pain, and his facial expressions agree with this. He has been trying to pass for so long and I know it may only be little more than a week I feel as if it has been this entire year. No matter what I do he is going to die. That is the first time I have actually said it. No one should have to suffer the indignities that he has over the past year. I know death is an end, yet it is also a release. To be released form all of this just might be worth everything that has happened. I am told "That which does not kill you makes you stronger". I this is true I will soon be able to lift buses.
Kenny

Kevin update

Kevin is sleeping longer. He can no longer swallow any pills. He has stopped his Kepra, for seizures, and is starting to loose touch with reality. Last evening he wanted his shoes to take his pain medicine. This was a little funny. He is getting meaner when he is awake. He thought he need to poop at 3 this morning so Dave and I got him on the bedpan, noxious gasses emanated from him but that was all. He insisted that I wipe his hiney and show him the wipe before he would let up get him back to bed, this was after insisting we change the diaper, that was not dirty at all. This morning he had to double check that he was getting the correct dose of morphine, when I told him this was not necessary he wanted me to get out. I proceeded to inform him that he would be getting out to the hospital, this effected a quick change in his attitude. He is much nicer now. I am going to have the port accessed tomorrow so he can get the meds with an intravenous push rather than by mouth. I think this will eliminate a lot of problems with him waiting until the pin is intense to get help. I just want him to be comfortable. A pleasant disposition would not hurt either.

Kevin Request

Kevin has asked that only family visit from now on. He is unable to speak on the phone also.
Kevin had a bad day yesterday. He is awake very little. When he is awake he is a little foggy, I believe due to the morphine. He is exhausted just by peeing. This morning he appears a little better. He is keeping a fever and has no apatite unless I mention it and he eats just to spite me. Little does he know that this is my plan (Ha Ha). I will keep with the updates as they progress.

Small changesS

Kevin needed to increase the amount of morphine last night. He had a very nice visit with his parents and Keith. He spoke with Steve Katz, that was something he had been wanting to do before he passed. Kevin wanted Steve to be one of the speakers at the memorial service. Steve graciously agreed. Kevin slept until 1:30 and then needed more pain medicine and to pee. He slept through till 7 his morning and is now sleeping again. Last night Kevin realized that he will never get out of bed again while he is alive. This was a mental blow to him and something I have known for a few days. He simply can not stand even with help. At least his pain is under con troll.
Kenny

Kevin is holing his own

Kevin is about the same. He is usually lucid from 5 until about8or so. The rest of the time the morphine, and every hing else keeps him sleeping or in a state of drudged euphoria. He is in no pain most of the time. He is lasting far longer than anyone expected. He is appearing to be less mentally acute. He is confused easily and very firm that he is correct. Like this is anything new.
On to a more serious note. When talking or visiting with him Kevin requests that his wish of no prayer or talk of religion take place. He is very adamant on this and I will not allow him to be upset by it. Everyone makes choices about what one believes and how they go about acting upon that belief. This will extend to the services following his passing. I want to make this perfectly clear. NO REFERENCE TO RELIGION OR OPEN PRAYER WILL BE TOLERATED!!!. If you wish to pray privately for the family or for Kevin this is your choice. This is what Kevin wants and we ask that you honor his wishes and respect what he wants. We understand that may be difficult for some and if you can not respect this please do not attend and remember him in your own way.
Kenny

Kevin Progresses

Kevin started on the Morphine yesterday morning. He is sleeping most of the time and is eating very little, even Ice Cream. He has asked that visits are short and in small numbers. He has a hard time keeping focus. He says that he is ready to go. the calm that he is currently experiencing is comforting. He appears to be at peace with what is to come. I on the other hand am finding thing a little more difficult to deal with as time passes. I went to the grocery store yesterday, and picked out 2 pork chops. I realized that they needed to be wrapped individually. I no longer need to cook for 2. The butcher was a little freaked out by my near tearful event. I am finding that my normal route has been about 2 for so long I do not ember how to start to live for 1. Time, and possibly a few Appletinies, will make this better.
I want to thank everyone for the visits,and support with all forms of communication. I am trying to keep this updated at least every other day and will post after Kevin passes, what the arrangements are.
Kenny

Kevn holds court

Kevin has been visited and contacted by so many people it is wonderful to know that he is in so many lives and will be remembered by so many. He is really enjoying all the attention. He would never admit it but he loves to be the center of attention. When he is sitting or laying on his side and everyone else in the room is standing or sitting await ting his response I wonder if I should get him a tiaerra and scepter to anoint the chosen ones. I would give him a sward but I would easily end up on the wrong end of that situation! He is feeling the infection proceed up further into his abdomen and feel the bubbles from it . The pain is mainly on his right side, and lower region. I have asked him if he is changing his mind and he assured me no. He is convinced he wont last past Tuesday. I told him he has never been on time in his life so what makes him think he will be now? It is almost 10 am and he is still sleeping but needs to eat breakfast, so I am off to do his bidding.
Kenny

Kevin comes home

Kevin decided on Wednesday to stop all treatment for the tumor and the infection. Holes were found in his colon, and would require a colostomy. The recovery would have taken many months and possibly never be complete. He came home yesterday with Hospice care. He reached this decision after much thought, and he wants to have the most quality with the time he has left. Many will disagree with this decision. That is your prerogative. This is what Kevin wants. He is so week from the infections, tumor, and medications that he is not able to do most of the things that he enjoys. This has been a terrible and wonderful 20 months. He wants to talk and visit, but please understand his energy is low and this is effecting his speech. He can not always speak on the phone. I will try to keep this updated daily, no promises. When the time comes he will be at home in our bedroom.
I will post the final arrangements when they are made.

To the Hospital AGAIN!!!

Kevin returned to BJC today. He is having drainage that aperars to be coming from his colin into the inside of the wound. This has been suspected to be the cause of the infection and now it may be found He is in good spirits and feels as if the infectin is starting again. He is exhausted from all of this and is feeling as if the problem is not fixed and soon he is unsure of the posibilities. He is considering a colostomy if it would help with the pain and infection. The tests will start tomorrow and he is ready for the outcome whatever it is.
Kenny

Very long day

Wednesday turned out to be very long day, from 8-6. It took Kenny and I our friend Dave, who spent the day with us and who we are very greatful for his help, to get back in the house. The last appointment of the day was with Colo-Rectal surgeon and even with the Perocit, I was in pain from the exam. I am scheduled for out patient surgery on 9/3/09 to remove half of the internal Warts. At least they didn't notice any open wounds. We recived the MRI results in the mail today, they didn't have the results on Wednesday. It is still showing growth but not very quickly. On 2/11/09 it measured 2.8 x 1.2 cm and on 8/12/09 it measured 3.5 x 2.1 cm.

Doctors

We visited with the Urologist yesterday, the wound is healing and I was able to get the catherader taken out (hurrah!!). The original wound is completely healed and the new incesion has closed about 50%. Tommorrow I have an MRI, blood work, Oncologist appt, and the first appt with Colo-Rectal surgon since the hospital. They think I might have a fissure in my rectum that is contribuiting to the infections. My immune system is still whacked out enough that either I have inernal hemmoroids or warts. I have been sleeping alot this time around and it appears to be helping with the healing process. The speach therapy I took in the extended care facility has really paid off. Other than just before I take my meds my speech is clearer. We will not be done with appointments until late tomorrow so I will post the results of the MRI on Thursday.

I am back!!!!

I am finally awake and feel up to doing a post. The wound has continued to heal and I will get the catherder out Monday (hurrah!). I want to thank everyone who has called are stopped by. That's all for now.

Kevin is healing more every day. He is sleeping a lot the last couple of days, but I believe it is due to the wound healing and just over doing it. He is only taking one perkaset to do the changes. Thursday night his hip and shoulder were bothering him so he took a paing killer to help him sleep. We have our routine now and that is what works best for us. Deviatiion from the morning schedule is frought with uglyness.
Kevin goes to the Doctor on Monday, this is the GP so not much will happen. Next Monday he goes to the Urologist and gets the cathater out! Then that Wednesday we see the Oncologist, that entails an MRI, and bloodwork. We should also have an apointment made for the Colal Rectal visit after the Urologist.
All in all everything is going well. Ther are always a few bumps along the way, but we ;were both prepaired for the realities of what his care would entail this time around. This realistic thinking has helped to keep our expectations in check. Nothing worse than expecting far more that you will actualy recieve. Kevin is really being realistic about this. He no longer acts as though I am a qualified nurse, and does as much for himself as he can. I think this is very good for him. He needs to keep as much indepedence as possible. His speach is doing excelent also. The speach has made a huge imporvement to his whole outlook.
Kenny