Well after haggling back and forth over the weekend, all day Monday and Tuesday morning; we decided to stay at the original facility. I was starting to feel uncomfortable with the pushiness of the other facility and every time I talked to them they would say something to the effect, "I worked there for 15 years and I am so glad I came here; they just don't do a good job there." I just don't think that it is good business practice to put down the competitor and it certainly is not ethical. I spoke to patients in this facility and they are all very happy with the care and say that they are especially happy with the therapy departments. I was told by one patient that "you shouldn't have come in on a weekend, the weekend staff only work weekends and don't usually know how everything works". Then she told me that the progress they have make with her in the therapy department is remarkable and that she couldn't be happier with the results. She said "they work you hard but it's worth it!" I asked Marc to make the final decision as to whether to change facilities and he opted to stay here.
I am very impressed with the therapy staff: occupational, physical and speech. They focus primarily on neurological problems and are very experienced. I especially liked the way they encouraged Marc when he really didn't want to continue. The nursing staff has come around and are very attentive to Marc now. I guess being the squeaky wheel helped some.
I am discouraged with Marc as he doesn't seem to have the drive that he has always had. It concerns me a great deal. I just think he is so tired of being sick that he would just rather lie in bed than get up and try to do anything. That just isn't Marc! If any of you out there have any ideas on how to perk him up I would appreciate any and all suggestions. I left today for about 4 hours, ran some errands, got a haircut and had lunch with an old friend. I think it was good for Marc not to have me hovering while he was in therapy. I am hoping that he will try a little harder if I am not there. I am going to go back to work on Thursday, so he will be here without anyone but the staff to watch over him during the day. I will continue to spend the nights here, so I will at least be with him a few hours every day. I think it also did me some good to get away for a while but I just can't help worrying about him while I am away. Care giving to a loved one is so difficult, it is so hard to be objective and you second guess all of your decisions. Marc was my rock and now I have to make decisions that may effect the outcome of this illness. I pray every day that I make the right decisions. I want more than anything for Marc to pull through this hurdle and not have any more obstacles.
I did talk to the Dr. here this afternoon and told him I would really like a full evaluation to figure out just why Marc is having the respiratory issues as he has never had any in the past. He is scheduled for a sleep study on July 1st and the staff pulmonologist will be evaluating him prior to that. I just hope they can figure out the cause of this last episode. We don't go back to MD Anderson until July 27 and 28 and will not have another MRI until the 27th. I pray that the MRI remains clear.
Thank all of you for your comments to the blog and the encouraging e-mails. I will try to post more later in the week.
Tuesday, June 23, 2009
Saturday, June 20, 2009
Now in rehab . . . it seems like we're never going to get ahead!
Just a little history to update you on Marc's status. He had been active and was even mowing the yard with the riding mower. He was walking with his cane and getting around pretty good. I had gone back to work and everything seemed to be going well. About 2 weeks ago he started getting progressively weaker. The first week I would come home from work and find him in his recliner and he told me he just wasn't feeling good, that the muscles in his abdomen hurt like he had pulled them. I tried calling his Dr. on Friday morning and left several messages on the 'damned' voice mail system and no one ever called me back. That weekend I couldn't get him up to do anything, he would just go between his recliner and the bed and wouldn't eat. I called the neighbor and her daughter agreed to come to the house and stay with Marc every day while I worked. Although I felt much better having someone stay with Marc I still was uncomfortable with his failure to improve. He felt so bad that he didn't even want to go to speech therapy and that is one thing that always perked him up. I did finally get a hold of someone in his Dr's office on Monday and found that the Doc was out all week and they couldn't get him in until the 24th. They did offer me an appointment with the PA but I had seen her before and was not impressed.
So I was stuck with no Dr. and Marc needed to be seen. I called Steve's Dr. and they worked him in on Wednesday morning. After taking a thorough history and examining Marc the Doc felt Marc may have a systemic infection causing the extreme fatigue and weakness. Marc's blood pressure was very low and his oxygen saturation at the office was at 77%. That wasn't good. So the Doc sent us to the ER.
We were only in the ER for about 3 hours before we were admitted. All the testing revealed only a low Potassium level, a low white blood count and low O2 sats. So they gave him IV fluids, Potassium and put him on oxygen. A CT scan of his chest was negative as was an Xray of his abdomen. Physical therapy finally got him out of bed on Thursday afternoon and walked him about 20 feet using a walker. On Friday morning his labs were normal and he had walked a little more with physical therapy's assistance. Respiratory therapy assessed his oxygen sats while he was sleeping and the were all over the place, suggesting severe sleep apnea. We knew that from his last admission but Marc had refused a CPAP. The Dr. said he no longer needed to be hospitalized but did need oxygen all the time, needed a full evaluation for sleep apnea and felt that Marc would benefit from admission to a rehabilitation facility. I agreed, as I knew it would be too much for me to take care of him at home with minimal assistance from home health.
I was left to choose what facility to send Marc to. We have 2 facilities within 2 miles of our house, one is new and the other one has been here for at least 17 years (it was here when we moved to Texas). I asked if I would be able to stay with Marc and was told that I could stay in the older facility but in the new facility they asked family to go home at night; so I choose the older facility. I guess the place is probably OK but my first impressions were not good. I just did not have a good feeling about it. For example, on admission last night we were told that Marc would have physical therapy and speech therapy over the weekend but they gave me no information as to when the therapy would begin. Well this morning Marc was up early and wanted a shower, so I asked for towels and took him to the shower. The nurse brought me towels but did not offer to assist and did not tell me that the occupational therapist would be in to assess Marc's skill level (which included helping him take a shower). Well when the OT came in at 10 am and told me she was going to do her assessment on Marc and would start by taking him to the shower to see how he would do. I lost it! They had known all along that this is what would happen but didn't bother to tell me. I let it be known that I was not happy.
I was so upset that I called Steve to come stay with Marc and I took clothes home to wash. I then got on the internet and looked up the newer rehab facility and called them. They were more than happy to admit Marc there and offered me a tour "any time of the day or night". The supervisor I talked to put me in touch with the admissions supervisor. I was told that I needed to request that the Dr. (whom we had yet to see) write an order to have Reliant come to assess Marc so that he could be transferred. So I talked to Marc's nurse at Health South and was told I had to talk to the charge nurse. When I called the charge nurse she was not available. I then called the Reliant admissions supervisor and she contacted the liaison with Health South who then called me. She as much as told me I wasn't giving them a chance and they would not do anything. Well if you know me, that did not set well. I went to the Reliant facility and was given a tour. I met with the admission's supervisor, who came in on her day off to talk to me. Long story short, we have to wait until Monday morning and call the insurance company to get approval before we can do anything else.
When I got back, everyone was bending over backward to please me. The case manager came in from home to talk to me. I just told her "you have until Monday to change my mind". I don't think they will but I will give them a chance.
Needless to say, it has been a very frustrating experience and one I don't wish on anyone. I just pray that the rehab helps Marc and he gets back to where he has some independence again. I know that it has to be devastating for him and I just can't imagine how he feels. He still cannot say more that 3 or 4 words and can't get out the one word that would complete the sentence, so that leaves me guessing to what he is trying to say. He will try to write what he wants but usually leaves out key letters and I still don't know what he is trying to tell me. He then just gets so frustrated he says "I don't know" and will just quit trying.
I ask you to continue to pray for Marc's recovery. I will post again next week.
So I was stuck with no Dr. and Marc needed to be seen. I called Steve's Dr. and they worked him in on Wednesday morning. After taking a thorough history and examining Marc the Doc felt Marc may have a systemic infection causing the extreme fatigue and weakness. Marc's blood pressure was very low and his oxygen saturation at the office was at 77%. That wasn't good. So the Doc sent us to the ER.
We were only in the ER for about 3 hours before we were admitted. All the testing revealed only a low Potassium level, a low white blood count and low O2 sats. So they gave him IV fluids, Potassium and put him on oxygen. A CT scan of his chest was negative as was an Xray of his abdomen. Physical therapy finally got him out of bed on Thursday afternoon and walked him about 20 feet using a walker. On Friday morning his labs were normal and he had walked a little more with physical therapy's assistance. Respiratory therapy assessed his oxygen sats while he was sleeping and the were all over the place, suggesting severe sleep apnea. We knew that from his last admission but Marc had refused a CPAP. The Dr. said he no longer needed to be hospitalized but did need oxygen all the time, needed a full evaluation for sleep apnea and felt that Marc would benefit from admission to a rehabilitation facility. I agreed, as I knew it would be too much for me to take care of him at home with minimal assistance from home health.
I was left to choose what facility to send Marc to. We have 2 facilities within 2 miles of our house, one is new and the other one has been here for at least 17 years (it was here when we moved to Texas). I asked if I would be able to stay with Marc and was told that I could stay in the older facility but in the new facility they asked family to go home at night; so I choose the older facility. I guess the place is probably OK but my first impressions were not good. I just did not have a good feeling about it. For example, on admission last night we were told that Marc would have physical therapy and speech therapy over the weekend but they gave me no information as to when the therapy would begin. Well this morning Marc was up early and wanted a shower, so I asked for towels and took him to the shower. The nurse brought me towels but did not offer to assist and did not tell me that the occupational therapist would be in to assess Marc's skill level (which included helping him take a shower). Well when the OT came in at 10 am and told me she was going to do her assessment on Marc and would start by taking him to the shower to see how he would do. I lost it! They had known all along that this is what would happen but didn't bother to tell me. I let it be known that I was not happy.
I was so upset that I called Steve to come stay with Marc and I took clothes home to wash. I then got on the internet and looked up the newer rehab facility and called them. They were more than happy to admit Marc there and offered me a tour "any time of the day or night". The supervisor I talked to put me in touch with the admissions supervisor. I was told that I needed to request that the Dr. (whom we had yet to see) write an order to have Reliant come to assess Marc so that he could be transferred. So I talked to Marc's nurse at Health South and was told I had to talk to the charge nurse. When I called the charge nurse she was not available. I then called the Reliant admissions supervisor and she contacted the liaison with Health South who then called me. She as much as told me I wasn't giving them a chance and they would not do anything. Well if you know me, that did not set well. I went to the Reliant facility and was given a tour. I met with the admission's supervisor, who came in on her day off to talk to me. Long story short, we have to wait until Monday morning and call the insurance company to get approval before we can do anything else.
When I got back, everyone was bending over backward to please me. The case manager came in from home to talk to me. I just told her "you have until Monday to change my mind". I don't think they will but I will give them a chance.
Needless to say, it has been a very frustrating experience and one I don't wish on anyone. I just pray that the rehab helps Marc and he gets back to where he has some independence again. I know that it has to be devastating for him and I just can't imagine how he feels. He still cannot say more that 3 or 4 words and can't get out the one word that would complete the sentence, so that leaves me guessing to what he is trying to say. He will try to write what he wants but usually leaves out key letters and I still don't know what he is trying to tell me. He then just gets so frustrated he says "I don't know" and will just quit trying.
I ask you to continue to pray for Marc's recovery. I will post again next week.
Wednesday, May 27, 2009
Good news!
Marc had an MRI on Friday and we went to MD Anderson on Tuesday. After a long weekend of stressing about the results we found out on Tuesday that there is NO TUMOR on the MRI. What a relief. We are so blessed to have all the prayers that have been sent our way. Thank you to everyone. He will have another MRI in 2 months.
We enjoyed a long Memorial weekend with family. Marcia's sister and her husband, Mona and Larry, were here visiting. Larry and Steve replaced the window in our master bedroom that Marc had all but removed back when he was doing better. They put up siding and trim and now all that is left is painting. It is wonderful to have that done and not have to worry about getting it done. We truly appreciated all of their work!
Steve and the grandkids were here most of the weekend. The grandkids got acquainted with Mona and Larry and swam until they were pooped. Steve barbecued each evening for us. The refrigerator is so full I won't have to cook for a week.
We don't go back to MD Anderson for another 2 months. I will post about every 2 weeks just to keep you updated on Marc's progress.
We enjoyed a long Memorial weekend with family. Marcia's sister and her husband, Mona and Larry, were here visiting. Larry and Steve replaced the window in our master bedroom that Marc had all but removed back when he was doing better. They put up siding and trim and now all that is left is painting. It is wonderful to have that done and not have to worry about getting it done. We truly appreciated all of their work!
Steve and the grandkids were here most of the weekend. The grandkids got acquainted with Mona and Larry and swam until they were pooped. Steve barbecued each evening for us. The refrigerator is so full I won't have to cook for a week.
We don't go back to MD Anderson for another 2 months. I will post about every 2 weeks just to keep you updated on Marc's progress.
Friday, May 8, 2009
Happy Mother's Day to all
Marc and I would like to wish you all a very happy Mother's Day.
Marc is doing a little better. He still can't talk well and can only say a couple of words at a time. The biggest problem is that he will say something like "We need to" and can't get the most important word out. It does seem to be improving some, but much more slowly this time than on previous occasions. It is very frustrating for him and difficult for both of us. He is able to read the paper and says that he understands what he reads. He just seems to have a short circuit for expressing himself. He is still extremely tired, thanks again to the steroids and doesn't have a lot of stamina. The swelling in his lower legs, feet and abdomen has worsened again but fortunately it hasn't gotten as bad as it was in the past. He has gained 25 pounds since he was discharged from the hospital, all in fluid. I know it has to be uncomfortable.
I took Marc in today to have an ingrown toenail removed. I have been after him for years to have it done and he finally agreed. He say's it isn't bothering him tonight. His pain tolerance continues to amaze me.
I plan to return to work on Monday but will only be working half days for a while, at least until I feel Marc can call me if he needs help.
Please continue to keep Marc in your prayers.
Marc is doing a little better. He still can't talk well and can only say a couple of words at a time. The biggest problem is that he will say something like "We need to" and can't get the most important word out. It does seem to be improving some, but much more slowly this time than on previous occasions. It is very frustrating for him and difficult for both of us. He is able to read the paper and says that he understands what he reads. He just seems to have a short circuit for expressing himself. He is still extremely tired, thanks again to the steroids and doesn't have a lot of stamina. The swelling in his lower legs, feet and abdomen has worsened again but fortunately it hasn't gotten as bad as it was in the past. He has gained 25 pounds since he was discharged from the hospital, all in fluid. I know it has to be uncomfortable.
I took Marc in today to have an ingrown toenail removed. I have been after him for years to have it done and he finally agreed. He say's it isn't bothering him tonight. His pain tolerance continues to amaze me.
I plan to return to work on Monday but will only be working half days for a while, at least until I feel Marc can call me if he needs help.
Please continue to keep Marc in your prayers.
Tuesday, April 28, 2009
Good report from MD Anderson today
Marc and I drove to Houston today to follow-up at MD Anderson after his hospitalization. Dr. Jung, Marc's neuro-oncologist, told us he was pleased with Marc's progress since his discharge last week. He said that he had reviewed the MRI and agreed with Dr. McDonald that the mass was smaller. He told us that the shrinkage would continue but would be slow and would be gauged over many months (not weeks) and would be measured by successive MRIs. He also said that he was very impressed with Dr. McDonald, our local neurologist and Dr. Jain, the hospitalist who has cared for Marc each hospitalization. He said that either he or his nurse practitioner spoke to Dr. McDonald and Dr. Jain frequently while Marc was hospitalized and after discharge. It is really wonderful to have such good collaboration between the caregivers. It sure makes us feel a lot better about everything.
Marc has started to have swelling in his lower legs and feet from taking the steroids again; although it is not nearly as bad as it has been in the past. Dr. Jung has started to slowly reduce the steroid dosage over the next 4 weeks to a more tolerable level. Hopefully that will make a difference and reduce the severe side effects of the high doses of the drugs.
Marc has regained nearly all of the strength back in his right hand. He is still having a great deal of difficulty with speech but it has improved some in the last week. We still have many fustrating moments when no matter how hard Marc tries, he cannot make me understand what he is trying to say. He can write now but the letters are often jumbled and don't make since (to me). Between the talking and writing I am understanding more but we still have a long way to go. We are back in speech therapy twice a week now and will continue until his speech improves to where it was before this last episode.
Marc's next followup with Dr. Jung is May 26th. He will have another MRI on May 22nd. We are praying that the results will again show shrinkage of the mass.
Marc has started to have swelling in his lower legs and feet from taking the steroids again; although it is not nearly as bad as it has been in the past. Dr. Jung has started to slowly reduce the steroid dosage over the next 4 weeks to a more tolerable level. Hopefully that will make a difference and reduce the severe side effects of the high doses of the drugs.
Marc has regained nearly all of the strength back in his right hand. He is still having a great deal of difficulty with speech but it has improved some in the last week. We still have many fustrating moments when no matter how hard Marc tries, he cannot make me understand what he is trying to say. He can write now but the letters are often jumbled and don't make since (to me). Between the talking and writing I am understanding more but we still have a long way to go. We are back in speech therapy twice a week now and will continue until his speech improves to where it was before this last episode.
Marc's next followup with Dr. Jung is May 26th. He will have another MRI on May 22nd. We are praying that the results will again show shrinkage of the mass.
Wednesday, April 22, 2009
Home again!
After a long day yesterday we made it home about 8pm. It is so good to be home again. The neurologist told Marc last evening that he saw no reason he couldn't go home but that he would need to be discharged by the hospitalist who admitted him. She had made rounds early yesterday morning and was not scheduled to be back in until this morning. Marc was infuriated that he would have to spend another night in the hospital; so I asked the nurse to page her. She called back in and talked to the nurse, to me and again to the nurse and gave orders for Marc to be released. I am so glad, as I don't know how Marc would have managed another night in the hospital.
Marc had the repeat MRI yesterday morning. We didn't get the results until the neurologist came in about 6pm. There is basically no change since the last MRI. However it is difficult to really tell as the MRIs were done at different sites, using different techniques. The report indicated a small, 17mm mass just behind the initial tumor site. Taken by itself, the news would be discouraging but comparing it to the MRIs done at MD Anderson the news was encouraging. The mass on the March 6th MRI measured 25mm and on March 30th it measured 22mm. We think that the mass is smaller; but what we know for sure is it has not gotten larger!
Marc has had no seizures for the last 3 days. The focal seizures were almost continuous for 3 days from admission. That in itself is enough to cause issues. Marc again has lingering effects from the seizures; his speech has suffered and he has right sided weakness, especially in the arm and hand. The weakness is worse than it was when he was diagnosed last October. The speech is also bad, but not quite as bad as it was when he was initially diagnosed. He gets stuck on words, for example when he tries to say something it come out as "we can walk" and then he just continues repeating "walk, walk, walk, walk" or "win" or "water", etc. It is a guessing game most of the time to figure out what he is trying to tell me and I am not very good at guessing, which tends to frustrate Marc even more. We have speech therapy and physical therapy evaluations scheduled tomorrow and will follow their recommendations for further therapies.
An old friend stopped by this afternoon to see Marc. He was touched and thrilled to have a visitor. I know he gets tired of listening to and looking at me and it was good for him to see someone else for a change. Please feel free to stop by to see Marc, it means a lot to him.
Marc is very frustrated and I cannot begin to imagine how he feels. I cannot empathize but I can understand his anger and frustration. I just have to keep asking myself "How would I feel if I couldn't express myself or do the things that I normally do?" It is difficult for both of us but we will manage. Your prayers and support are very important to us.
Marc had the repeat MRI yesterday morning. We didn't get the results until the neurologist came in about 6pm. There is basically no change since the last MRI. However it is difficult to really tell as the MRIs were done at different sites, using different techniques. The report indicated a small, 17mm mass just behind the initial tumor site. Taken by itself, the news would be discouraging but comparing it to the MRIs done at MD Anderson the news was encouraging. The mass on the March 6th MRI measured 25mm and on March 30th it measured 22mm. We think that the mass is smaller; but what we know for sure is it has not gotten larger!
Marc has had no seizures for the last 3 days. The focal seizures were almost continuous for 3 days from admission. That in itself is enough to cause issues. Marc again has lingering effects from the seizures; his speech has suffered and he has right sided weakness, especially in the arm and hand. The weakness is worse than it was when he was diagnosed last October. The speech is also bad, but not quite as bad as it was when he was initially diagnosed. He gets stuck on words, for example when he tries to say something it come out as "we can walk" and then he just continues repeating "walk, walk, walk, walk" or "win" or "water", etc. It is a guessing game most of the time to figure out what he is trying to tell me and I am not very good at guessing, which tends to frustrate Marc even more. We have speech therapy and physical therapy evaluations scheduled tomorrow and will follow their recommendations for further therapies.
An old friend stopped by this afternoon to see Marc. He was touched and thrilled to have a visitor. I know he gets tired of listening to and looking at me and it was good for him to see someone else for a change. Please feel free to stop by to see Marc, it means a lot to him.
Marc is very frustrated and I cannot begin to imagine how he feels. I cannot empathize but I can understand his anger and frustration. I just have to keep asking myself "How would I feel if I couldn't express myself or do the things that I normally do?" It is difficult for both of us but we will manage. Your prayers and support are very important to us.
Monday, April 20, 2009
Still here
We are still at Woodlands Memorial Hospital. Marc seems a little more communicative tonight than he has been. So far his tests showed a deep vein thrombosis (DVT) in the femoral and poplietal veins in the left leg; the same leg as the previous DVTs in December. The Dr. recommended that Marc have an inferior vena cava filter placed to prevent future pulmonary emboli. The filter will block any large clots from going to the heart, lungs or brain while at the same time allowing blood flow through the vena cava; thus preventing complications such as stroke, heart attack or pulmonary emboli. The filter was inserted under conscious sedation today using the same procedure they use for cardiac caths only in the femoral vein instead of the femoral artery. The procedure took only about 10 minutes and Marc was laughing and smiling when he came out, from the "happy juice" he was given for sedation. It was nice to see him smile as it has been awhile.
The neurologist and the neuro-oncologist still believe that the issue was weaning Marc from the steroids. The steroids worked well keeping the inflammation from the brain and when they were stopped the inflammation returned and presented itself with the seizures. Marc is back on the steroids and will remain on them, we just have to find the right dose. You can bet I will argue if they tell us to wean them again! They have also added another antiseizure medicine to the list of medicines he is taking. It's a good thing that Marc is good at taking pills or I would really have my hands full. So far this admission he has had 3 CT scans all showing no changes and has an MRI scheduled for tomorrow.
Marc has been up walking in the room today and told me "We have to walk!" and headed out the door to the hallway. He then stopped at a wheelchair that was in the hall, sat down and said "now walk"; so he sat and I walked (pushed). He sure hasn't lost his warped since of humor.
Julie is going to bring the grandkids up to see him later tonight for a bit and I am sure that will thrill him. He always perks up when they are around.
I will post more in a couple of days. Your prayers and thoughts are appreciated.
The neurologist and the neuro-oncologist still believe that the issue was weaning Marc from the steroids. The steroids worked well keeping the inflammation from the brain and when they were stopped the inflammation returned and presented itself with the seizures. Marc is back on the steroids and will remain on them, we just have to find the right dose. You can bet I will argue if they tell us to wean them again! They have also added another antiseizure medicine to the list of medicines he is taking. It's a good thing that Marc is good at taking pills or I would really have my hands full. So far this admission he has had 3 CT scans all showing no changes and has an MRI scheduled for tomorrow.
Marc has been up walking in the room today and told me "We have to walk!" and headed out the door to the hallway. He then stopped at a wheelchair that was in the hall, sat down and said "now walk"; so he sat and I walked (pushed). He sure hasn't lost his warped since of humor.
Julie is going to bring the grandkids up to see him later tonight for a bit and I am sure that will thrill him. He always perks up when they are around.
I will post more in a couple of days. Your prayers and thoughts are appreciated.
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