There are those wanting and asking me to post an update on Stephen as I have not written a status pertaining to him since Saturday evening. This post will be long but will try to update. On Saturday night, The LORDs Day, and Monday, he was confused likely 90% of the time at the hospital. He was still eating like a little piggy, however, and drinking good which was a good thing and that continues through today. On Monday, he was found to have a very extended bladder and a foley catheter was inserted with an immediate return of 1500 cc of urine. His hematocrit was down to 22 and he was given two units of blood. His hematocrit always runs very low compared to a normal value. For him to be running 25-29 is high for him due to the chronic anemia related to the bone cancer. The chemotherapy he has been on contributes to anemia, also. He has had to have blood every 2-4 weeks since June of last year. Physical Therapy visited with him on Monday and would not attempt to stand him because he was teetering from side to side while sitting. His mind cleared Monday evening and continued clear through the night and today was a wonderful day for him mentally. His PCP today wants to keep him in hospital and let Physical Therapy work with him for a day or two with hopes to send him home with me with home health and a nurse to visit regularly several days a week. Physical Therapy, however, showed up at his room today when an EEG was being run and left without ever returning. I was told by several that if they come at a time that a patient is receiving a test, etc., they do not return for the day at all to that patient. So the entire day goes by without Physical Therapy seeing the person (as though their physical therapy is of much of anything). They were in his room working with him maximum (maybe) 13 minutes yesterday and then turned around and wrote in a report that I had discussed placing him in a rehab facility. That was not true. Not true at all. Another source said that Physical Therapy were solely the ones that recommended a rehab facility based upon their great knowledge obtained in a mere 10-13 minutes with him. The EEG had been ordered by a Neurologist who maintained this morning that Stephens confusion and falls were due to encephalopathy caused by the Lyrica that he was started on almost two weeks ago. A cancer doctor associated with the West Clinic where Stephen sees his own cancer doctor insisted today that the foley catheter remain permanent (though no one ran the urine test yesterday as stated that they had done yesterday to see if he has been experiencing a urinary tract infection but are doing so now because I brought it up after speaking with his night nurse and finding that no specimen had been collected on Monday and confronting him with this truth). After quite a go-around, he is ordering it to be discontinued to see how well Stephen does without it. There is no known history of Stephen retaining urine prior to Monday. I hope that he will not have to have it permanently. Now I will get to the part that is going to be hardest for me to write about. I cried and cried there at the hospital today over all of this and cried on the way home from the hospital. Stephen can come home to me with or without a standard hospital type of bed even without walking but he will require, of course, a wheelchair and supplies to care for him in changing him, etc., etc., etc. Insurance will pay for equipment needed (including a hospital bed to set up in the living room) but it will not pay for transport to and from necessary appointments to doctors and for radiation to the enlarged area on his right upper cheek bone under his right eye caused by a new cancerous tumor found. (I will insert here that one of the cancer doctors associated with the West Clinic all but came out and said on Saturday that we should consider his entire health picture before even considering radiation to the new cancer lesion. In other words, leave it be to grow and grow and grow considering the vast amount of cancer lesions throughout his body. I cut her off right away and told her straight out that I want it treated. As long as I have breath in my body, I want him treated. End of that subject.) I physically cannot lift him to standing and transfer him from wheelchair to car to wheelchair. I am 61 years old with my own health problems and yet, by Gods grace, have done a bang-up good job getting him out of the floor by myself, etc., etc., but even if I was 16 and in perfect health, with him at 6 feet 1 inch tall and weighing over 210 plus lbs., I would not be able to do it with him dead weight. I would need help. As I have said, insurance will not pay for transport services. Because he took that last fall with me at work, everybody and his brother are convinced that I need a sitter with him at night while I work four nights a week. Sounds ideal except that insurance does not pay for that. I am told that sitters here in Memphis charge 14-16 dollars an hour. A list of sitter services that only charge minimum wage for Tennessee was given to me today. Even at that, there is no way....NO way....that we could ever afford it. NO way. So, as a result, I have various medical people there with shotguns loaded and pointed right at me at the hospital demanding that he go to a skilled nursing home. That upstart, loud, and brass cancer doctor was choking that down me today with all of the gusto he could muster up. Note that he did not say rehab at a skilled nursing facility but was planning for long term til death do we part placement. He texted Stephens regular cancer doctor and one of his cancer doctors nurse practitioners to have one of them call me. The nurse practitioner is the one that called me. In all of the years I have known her, I have never met the woman I met today. This is the same woman who has encouraged us to keep praying and believing for Jesus to totally heal him yet she manifested with words that cut deep into me as though she had a knife thrusting it in over and over and over again. She told me that Stephen will die with this cancer. She told me to believe otherwise is for me to be totally unrealistic. She said the words: At the end of the day, he will not outlive this cancer. Saying all of these things, of course, to stamp out mine and Stephens desires for him to come home and to force us into a skilled nursing home until he dies. She eventually said that we would go with his PCPs suggestion of Physical Therapy working with him for a couple of days (and I have already explained to you that his day with them was missed today due to an EEG), but that at the end of the week a decision must be made about placing him in rehab at a skilled nursing home. She did use the word rehab but she had already said enough to make me know that eventual permanant placement in the skilled nursing home is what is intended. Insurance will indeed pay for rehab but when it fails to rehabilitate him according to what they want to see, he will either have to come home (with no insurance to pay for transport services and sitters) or be placed permanently in a skilled nursing home to live out his days here on earth. If placed permanently in the skilled nursing home, they will, at that point, take his disability check out of the home completely with him left a mere 30-40 dollars a month for his beloved snacks, soft drinks, new clothing, etc., etc. We will not even discuss what it will do to me financially. I, too, do not want him falling while I am at work (or any other time). He has fallen so many times especially since October of last year. I have seen him fall and pop his precious head on concrete and on bricks. His doctors have known about his falls but now are either concerned or feigning concern. I dont know which. I do know that I do not want him falling as he did last Wednesday morning with almost total mental confusion. Lyrica is out of his system, sure, but we are dealing with tumors (though improved) on the dura (covering) of his brain and the very real possibility of the cancer having crossed the blood-brain barrier at some point in time thus the confusion that he has displayed at times since November. The nurse practitioner tried today to make me believe that it will be too hard on me emotionally and physically to have him at home in a hospital bed, etc., with trying to work, too. I cannot quit my job. I have to work. Even if I live to retire at 65, I will have to continue working probably until the day I die (if I still have the health to do it). But we both want him home and are backed up against a wall due to lack of money to have him here. Isnt it something when money determines ones life. Yet it determines so much especially in health care. It is how it is. There is no getting around it. As far as it being too emotionally hard on me, try watching your handsome husband be devoured by satans cancer all over so many of his bones, skull, and now with a new lesion that actually is visible on his beautiful face and five tumors on the dura of his brain. Try watching and hearing your husband scream in pain while also screaming loudly for Jesus to help him. Try watching him be stuck with only you to walk through all of this horror with him. No family interest from most and minimal from the rest. Try feeling those feelings of shock, dismay, and disgust at every one of them as both of us have watched the neglect while spouting out the occasional words of I love you from them to him. Having the nerve to invite us to their little social functions while neglecting him and us saying no to every one of their self-serving and selfish requests. Try watching him lose his muscle tone when he was so super-strong. Try watching him lose his beautiful white hair. Try watching him go from one grave diagnosis to another grave diagnosis. Try watching him listen as a doctor tells him in January of this year that he only has 3-6 months to live. I have just about lost my mind going through this with my Prince. Grieving. Praying. Grieving. Had it not been for the verse in Gods Word that says His own have a sound mind, I honestly would have thought at times through this that I was headed straight to (or in) a total nervous breakdown. Having him home with me now would be to emotionally draining on me? She must be kidding. I read and hold on to Gods Word and have for all of these years. I have heard the doctors words for all of these years. It is quite a trial by fire of my own faith because the doctors words have proven to be what life is for us. Healing from God has not happened. I have not prayed the necessary prayer of faith and no one else has, either. It is not Gods fault that healing has not occurred. All in the world He asked for in James chapter five was the prayer of faith. It hasnt been prayed. Oh, how I have tried. Oh, how I have tried. Dear God, You know I have tried. Trying doesnt cut it with God. We have to DO. I looked at him sleeping in the hospital bed today. So happy when awake with eyes sparkling to eat and snack on his sweet goodies that I bring to him. So happy for me to read Gods Word to him and pray with him as he prays with me. Always thanking Jesus for everything is what he does and has done for all of these years. Trusting, as a baby would, that God is going to take care of him. I had seen him when awake once this afternoon looking up at the ceiling and asked him what he was thinking about. He said he was thinking about how he lost his Mom (to death in 1996) and how that Dad lacks the know-how to be a Dad. He wasnt accusing his Dad. He loves his Dad with all of his heart. He has never been able to put it to rest in his mind how that he has had to go through these years with only occassional visits and calls from his Dad when he has sense enough to know and see that others have parents who are right at their side through it all. It was though he was making an excuse for his Dad. I did not question him on what he had said. I knew what he was saying. No one knows but me (nor would believe it but me) the family neglect he has experienced through all of this. How I do wish my parents had been alive to love on him through this. He, however, has been stuck with just me. He has been granted, however, people that love him in the various Churches we have attended during these cancer years. People that love him even now from our workplace. Neighbors. People who work at various stores we have shopped at though the years. Gods love has been the greatest love. It just breaks my heart to see someone live and die neglected. It happens to so very many in these last days. Please do not neglect the dying. Please do not neglect the hurting and the grieving. Reach out to them. That is what God does. Jesus should not be left to be the only one showing love to those who so desperately need it. Thats my job. Thats your job. I will pray for Stephens total healing until my last breath or his. I refuse to quit. No way will I quit. No way. Even as I stood today with him asleep and tear after tear fell and caused wet spots on his sheet, I was praying. Please pray for his total healing with me. I love this man. He is so precious. I do not want God to take him away from me. I also do not want lectures on this from the pious and self-righteous. There is not a single person that ever went to Jesus for total healing that wanted to hear Him say no to their request. I do not want to hear Him say no, either. We are in a tight spot with all of this and I can see no way out. Stephen had a dream several days ago that he and I were enclosed in darkness with the soil beneath our feet and tall brick walls were all around us. He said I was screaming and crying. He said he kept using his finger to dig and dig at the mortar between bricks. Finally, an area on one of the brick walls broke apart as he had dug through the mortar with his finger and we exited. He said it was dark outside but that the stars were shining brightly in the sky showing us the path to walk to a city. I can only hope that this dream was a prophetic dream from God Himself. Please pray for us.
Posted on: Tue, 24 Jun 2014 23:18:43 +0000
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