Stan here:
Somehow I hit the wrong key and lost the stuff Deb had written about the doctor visit today so I will do the best I can to give a little update. The first thing that happened is this assistant had to come in the room and record in the computer the meds that Deb is taking. I must admit it is quite a list. It is all stuff that she would really like to not take but it is needed now because of the various issues. Perhaps the largest problem right now is some pretty strong bouts with nausea and last week she started with some new meds that have given some relief from this. She is able to be unhooked from all of the stuff for about 5 hours and now she is taking advantage of this. Like right now she is out with Mieke going to some store here in Holland. She is not painting the house yet but she is able to do some of the things around here. I think one of the problems is that much time has been spent in the recliner and every bit of that goes against all parts of her personality. However she finds it needed to have some bend in her midsection or otherwise that tube that is in her really hurts.
At the doctors visit today they told us they are going to start trying a few things. On Thursday they are going to do another CT scan and after they review that they are going to try and start feeding her through that stomach tube. The doc drew a picture today of how that thing works. It goes from the stomach into the intestinal tract and they hope they can introduce some feeding and stimulation to that area to get things working again. It is very true that one of the common themes of this whole adventure is that they still seems confident that all of this will work someday. Some of you have expressed that this entire matter has taken way to long. But I think we all have to realize that Deb's body has been though a lot. So what we have is a little off of the charts and the common thought is that patience is the key thought in all of this. Although it is hard and frustrating sometimes it is the only path we have right now.
This past Sunday Deb could have gone to church. That gives you some feel for the fact that some things are getting better. However, if at this point she would contract the flue or a bad cold it would make things even harder than they are right now so we have decided to keep contact with the outside to a minimum for this very reason. So she is shopping right now but trying her best to control the distance from people. It is people she likes the most so I am sure this will be kind of hard for her. But staying home all of the time is not all that great either so I think she is being real careful out there.
For now we are feeling OK with her feeling finer in the recliner. Somehow things feel like they are getting somewhat better. No great news yet in the medical area but some improvement in the overall outlook.
Stan
Monday, January 28, 2013
Saturday, January 19, 2013
A Letter about no Better
Stan Here:
Wow, Deb and I are sitting here in the family room and how we wish we could post a little something about progress. Very simply that is just not in the cards right now. It has been a really hard week at home. It is true that being home has some good things. We kind of thought that just the idea of home and the lack of hospital procedure would bring some improvement. Some of that is perhaps evident on the the mental side but we are at a standstill on the physical side. Very frankly some discouragement is in the picture right now.
Every night from about 8 till 8 the next morning Deb uses the IV. Other than a few liquid treats still no food can be consumed. Perhaps one of larger problems is that there is still .a lot a pain in the area the the tube is inserted in her midsection. So there is still a lot of stuff hooked up and managing all of that has kind of a pain in the rear feel to it. She is able to move around some and for brief periods disconnect the drain bag she has hooked up and shut off the tube that drains to that. She just went up and took a shower so she is able to navigate the steps but just barely. Last night she tried to sleep in the bed upstairs but that did not last all that long. She feels the best in the recliner downstairs. I think they sew that tube in so tight that some bend feels the best to her when she is sleeping. She has been sleeping well and that is a good thing. Perhaps the largest problem is that somehow the feeling of nausea seems to be there all the time. I cannot relate in total but it is painful for me to know that she does not seem to be able to rid herself of this no matter what she does and what she takes.
So that is it for now. Not all that much fun to write and even worse to endure. We pray for the day of normalcy and you can be sure when that comes we will post it in caps. Thanks once again for staying with us.
Stan
Wow, Deb and I are sitting here in the family room and how we wish we could post a little something about progress. Very simply that is just not in the cards right now. It has been a really hard week at home. It is true that being home has some good things. We kind of thought that just the idea of home and the lack of hospital procedure would bring some improvement. Some of that is perhaps evident on the the mental side but we are at a standstill on the physical side. Very frankly some discouragement is in the picture right now.
Every night from about 8 till 8 the next morning Deb uses the IV. Other than a few liquid treats still no food can be consumed. Perhaps one of larger problems is that there is still .a lot a pain in the area the the tube is inserted in her midsection. So there is still a lot of stuff hooked up and managing all of that has kind of a pain in the rear feel to it. She is able to move around some and for brief periods disconnect the drain bag she has hooked up and shut off the tube that drains to that. She just went up and took a shower so she is able to navigate the steps but just barely. Last night she tried to sleep in the bed upstairs but that did not last all that long. She feels the best in the recliner downstairs. I think they sew that tube in so tight that some bend feels the best to her when she is sleeping. She has been sleeping well and that is a good thing. Perhaps the largest problem is that somehow the feeling of nausea seems to be there all the time. I cannot relate in total but it is painful for me to know that she does not seem to be able to rid herself of this no matter what she does and what she takes.
So that is it for now. Not all that much fun to write and even worse to endure. We pray for the day of normalcy and you can be sure when that comes we will post it in caps. Thanks once again for staying with us.
Stan
Saturday, January 12, 2013
I'm Finally HOME!!!!!
After 49 days at Spectrum, I was able to come home today. The weather was a balmy 57 degrees when getting into the car. Mieke and Stan came to get me. I had lots of stuff to bring home after 7 wks. I took my first good nap in my recliner this afternoon. There really is no place like home!
I can't say I feel very good yet. The pgj tube hurts alot. They really sew it in tight,so that is a sorce of real discomfort, I'm sure it will get better every day. I try to clamp the tube shut as much as possible until I get nauseated, and then I open it up and it drains lots of bile. The goal when it is clamped is for it to go DOWN rather than out the stomach tube.
The Infusion company delivered two large boxes of stuff this afternoon. My refrig is now full of bags of TPN IV nutrition. The home health nurse came tonight at 6pm and started to teach me how to do it myself. It will run for 12 hrs every night. Another nurse will come back tomorrow night to make sure I feel comfortable with it all.
Mieke went to the store and got lots of clear liquid things for me and then made some jello when she got back. She is great!! She also had all that stuff to try and put away at home. She also went to the pharmacy and had all my prescriptions filled.
Stan seems very happy to have me home, I think he was getting plenty lonely.
I want to thank you all again for being my pray warriors. I can feel the support and love from you all. Please continue as I have a long way to go before this is over. I will so enjoy not having IVs beeping all night and being woke up for vital signs!! Deb
I can't say I feel very good yet. The pgj tube hurts alot. They really sew it in tight,so that is a sorce of real discomfort, I'm sure it will get better every day. I try to clamp the tube shut as much as possible until I get nauseated, and then I open it up and it drains lots of bile. The goal when it is clamped is for it to go DOWN rather than out the stomach tube.
The Infusion company delivered two large boxes of stuff this afternoon. My refrig is now full of bags of TPN IV nutrition. The home health nurse came tonight at 6pm and started to teach me how to do it myself. It will run for 12 hrs every night. Another nurse will come back tomorrow night to make sure I feel comfortable with it all.
Mieke went to the store and got lots of clear liquid things for me and then made some jello when she got back. She is great!! She also had all that stuff to try and put away at home. She also went to the pharmacy and had all my prescriptions filled.
Stan seems very happy to have me home, I think he was getting plenty lonely.
I want to thank you all again for being my pray warriors. I can feel the support and love from you all. Please continue as I have a long way to go before this is over. I will so enjoy not having IVs beeping all night and being woke up for vital signs!! Deb
Thursday, January 10, 2013
GJ Tube now in place
Deb writing now. I had a GJ feeding/decompression tube inserted into my stomach today down in the Interventional Radiology Dept. So I could have my NG tube taken out which is the best part!!
The goal with this tube is all part of the plan to get me home.
I am happy to report that yesteray and today I did have a little action from below. My surgeon said we scarred the poop of out me, because my body knew that I was going to have another hole put in it. Even though things are slowing showing some progress, the Drs believe it will take awhile for them to come back completely. I have too much bile coming out of my stomach and intestions that make me very nauseous and then have to vomit. That is why the stomach tube will be used for decompression, meaning I can clamp or drain depending on how I feel.
They don't want to use the jejunum part of the tube to feed me tube feedings, because they feel it would put too much stress on my intestines, so I will be going home on nighttime IV TPN feedings. I will not be eating right away until bowel function improves quite a bit. I may get to have clear liquids, jello, popsickles, etc.
There is a company that provides the TPN feedings and all the equipment I will need. I will be getting these feedings during the night while I sleep. Believe me when I say this is not how I wish I was going home. But, I am so anxious to get out of the hospital that I will do just about anything I have to do to get home.
The goal is to get out of here Sat., but anything could happen, so I am keeping am open mind if it gets pushed back to Monday. I thank you all for the love and support, I couldn't have made it without you. Stay tuned, I hope the next blog is written from home in the comfort of my old recliner............Deb
The goal with this tube is all part of the plan to get me home.
I am happy to report that yesteray and today I did have a little action from below. My surgeon said we scarred the poop of out me, because my body knew that I was going to have another hole put in it. Even though things are slowing showing some progress, the Drs believe it will take awhile for them to come back completely. I have too much bile coming out of my stomach and intestions that make me very nauseous and then have to vomit. That is why the stomach tube will be used for decompression, meaning I can clamp or drain depending on how I feel.
They don't want to use the jejunum part of the tube to feed me tube feedings, because they feel it would put too much stress on my intestines, so I will be going home on nighttime IV TPN feedings. I will not be eating right away until bowel function improves quite a bit. I may get to have clear liquids, jello, popsickles, etc.
There is a company that provides the TPN feedings and all the equipment I will need. I will be getting these feedings during the night while I sleep. Believe me when I say this is not how I wish I was going home. But, I am so anxious to get out of the hospital that I will do just about anything I have to do to get home.
The goal is to get out of here Sat., but anything could happen, so I am keeping am open mind if it gets pushed back to Monday. I thank you all for the love and support, I couldn't have made it without you. Stay tuned, I hope the next blog is written from home in the comfort of my old recliner............Deb
Monday, January 7, 2013
Finally some good news!!
My surgeon was just in here to see me and he was very happy with the results of the CT scan I had today. It makes him optomistic regarding the future. There is no abcess, occlusion or obvious reasons for concern. So he and the colo/rectal surgeon confabed together and they both think with time, thinks will start working.
I did have my NG tube put back in yesterday am, I could just not stand the pain and pressure of all that bile building up in my stomach. Now, I think I have a cold and that really is a challange with all the suction tubes etc. I will make it through this, and laugh about it some day, SOME day. Dr. thinks that hopefully tomorrow it will come out..
Stan and Mieke have told me the number of friends and church members who send their concern and prayers. I thank you so much for the beautiful cards and notes, they keep me going.
I do check my work email occassionally, and thought it was time to update my manager from work. To my surprise her daughter had a baby boy today at 25 6/7 wks, wgt. 1lb 5 oz. right at the Children's Hospital that is right out my window that I stare at all day and night. If you could add a prayer for a very little boy that would be appreciated.
I did have my NG tube put back in yesterday am, I could just not stand the pain and pressure of all that bile building up in my stomach. Now, I think I have a cold and that really is a challange with all the suction tubes etc. I will make it through this, and laugh about it some day, SOME day. Dr. thinks that hopefully tomorrow it will come out..
Stan and Mieke have told me the number of friends and church members who send their concern and prayers. I thank you so much for the beautiful cards and notes, they keep me going.
I do check my work email occassionally, and thought it was time to update my manager from work. To my surprise her daughter had a baby boy today at 25 6/7 wks, wgt. 1lb 5 oz. right at the Children's Hospital that is right out my window that I stare at all day and night. If you could add a prayer for a very little boy that would be appreciated.
Saturday, January 5, 2013
Stuck in the Desert
Stan Here:
By now I think people have figured out when I am doing the writing that Deb is not feeling all that well. A couple of days ago I mentioned that the Bible story about 40 days and 40 nights in the desert might be worth mentioning. I thought then we could maybe set it as some sort of target but now we are at that point. So I wish I could think of something else as a target but the only thing that comes to mind is 1001 Arabian nights and I am not sure we want to think about that all that much. The facts are that not much progress has been made in the last week. Perhaps it might be best to answer some of the questions that people have asked. I will do the best I can with that. Here are some of the questions people have asked.
1. Have you thought of moving to another hospital where they might know of some procedure of treatment to move this forward? We have thought of that. Over the course of time though we have determined that although unusual they have seen similar cases here to what we have. In a small percentage of cases it takes a great deal of time for the intestines to wake up. With the degree of work that Deb has had done over the past year her system is taking a longer period to respond that any of us could have thought of. However they have had similar cases go up to 70 days. There is nothing out there procedurally that they could be done that they do not have the ability to handle here. Also the logistics of doing something like that would add to the problems of visits and all of the other things that Deb needs to stay in touch with some part of her world. Finally we remain confident in the staff and care here. It is true that we would have preferred in some of the pre surgery meetings that it might be mentioned that in rare cases it takes a great deal of time to get things working we have also found in talking with the staff that cases like this are quite rare.
2. Do they worry about needing to hook things up like she had when she came in? After all of this that would be a sad day. They do still have a high level of confidence that this will work and they are going to start a number of procedures to again determine why things are taking this long. Since it has been less that 2 weeks from the last surgery where they found the kink they do not want to risk doing a colonoscopy until they know things are very healed. They are talking about working with barium again to look once again at what is happening. They refer here to the surgery she had as "taking down an illiostomey" . You can be sure that it would be a huge disappointment to go through all of this and to put it back the way it was. But so far that is not being talked about.
3. How is Deb doing? This past week has been tough. She has had to fight some strong nausea this past week and today had to throw up everything that she had tried to consume this past week. But now she does feel better after that. Anything that goes in her is not passing much further than the stomach. For some time she had the NG tube but she hated that thing. She endured the nausea with the hope that they did not have to reinsert that tube and would do about anything to not have to have that again.
4. How about her spirits? There was one day last week that I told somebody that I was getting worried her spirit was broken. They were doing some test with barium and x-ray and she was on a hard table for 6 hours. This morning there was a barium enema that also was very painful. Most of you guys know that Deb is one of the tougher ladies in the game and prides herself in being able to handle medical stuff without complaining. I must tell you that some of the stuff they have had to do is right up there on the pain scale. The other element that exist is just simply that being here now 40 days is right at the top of the charts from the mental side. However these past days I think Deb has done well from this aspect. Many of you have visited (thank you) and your continued love and care for Deb has meant a lot to both of us.
If you have any other questions I will attempt to answer them. I think most of the stuff I know is someplace in the above. Seems kind of quiet at home. I have been doing some reading preparing for a class I will be teaching with one of our pastors. The name of the class is "Swinging Swords, Raging Lords, Great Rewards". Kind of a screwy title but it should be a good class. I was kind of hoping Deb would be back to attend the class and keep me in check. Does not look now like that is going to happen so I will have to do my best to keep it on the mild rather than the wild side. For now I will tell you that the swinging sword part is a reference to the Biblical story in Genesis 3 of God putting a couple of angels swinging swords at the entrance to the Garden of Eden to prevent Adam and Eve from going back in. It does seems a little like one of those angels got a little lost and is now hanging out at the door of this doggone hospital room. We are both kind of anxious for the "great reward" part of this whole deal. It will come!!! Thanks for staying with us.
Stan
By now I think people have figured out when I am doing the writing that Deb is not feeling all that well. A couple of days ago I mentioned that the Bible story about 40 days and 40 nights in the desert might be worth mentioning. I thought then we could maybe set it as some sort of target but now we are at that point. So I wish I could think of something else as a target but the only thing that comes to mind is 1001 Arabian nights and I am not sure we want to think about that all that much. The facts are that not much progress has been made in the last week. Perhaps it might be best to answer some of the questions that people have asked. I will do the best I can with that. Here are some of the questions people have asked.
1. Have you thought of moving to another hospital where they might know of some procedure of treatment to move this forward? We have thought of that. Over the course of time though we have determined that although unusual they have seen similar cases here to what we have. In a small percentage of cases it takes a great deal of time for the intestines to wake up. With the degree of work that Deb has had done over the past year her system is taking a longer period to respond that any of us could have thought of. However they have had similar cases go up to 70 days. There is nothing out there procedurally that they could be done that they do not have the ability to handle here. Also the logistics of doing something like that would add to the problems of visits and all of the other things that Deb needs to stay in touch with some part of her world. Finally we remain confident in the staff and care here. It is true that we would have preferred in some of the pre surgery meetings that it might be mentioned that in rare cases it takes a great deal of time to get things working we have also found in talking with the staff that cases like this are quite rare.
2. Do they worry about needing to hook things up like she had when she came in? After all of this that would be a sad day. They do still have a high level of confidence that this will work and they are going to start a number of procedures to again determine why things are taking this long. Since it has been less that 2 weeks from the last surgery where they found the kink they do not want to risk doing a colonoscopy until they know things are very healed. They are talking about working with barium again to look once again at what is happening. They refer here to the surgery she had as "taking down an illiostomey" . You can be sure that it would be a huge disappointment to go through all of this and to put it back the way it was. But so far that is not being talked about.
3. How is Deb doing? This past week has been tough. She has had to fight some strong nausea this past week and today had to throw up everything that she had tried to consume this past week. But now she does feel better after that. Anything that goes in her is not passing much further than the stomach. For some time she had the NG tube but she hated that thing. She endured the nausea with the hope that they did not have to reinsert that tube and would do about anything to not have to have that again.
4. How about her spirits? There was one day last week that I told somebody that I was getting worried her spirit was broken. They were doing some test with barium and x-ray and she was on a hard table for 6 hours. This morning there was a barium enema that also was very painful. Most of you guys know that Deb is one of the tougher ladies in the game and prides herself in being able to handle medical stuff without complaining. I must tell you that some of the stuff they have had to do is right up there on the pain scale. The other element that exist is just simply that being here now 40 days is right at the top of the charts from the mental side. However these past days I think Deb has done well from this aspect. Many of you have visited (thank you) and your continued love and care for Deb has meant a lot to both of us.
If you have any other questions I will attempt to answer them. I think most of the stuff I know is someplace in the above. Seems kind of quiet at home. I have been doing some reading preparing for a class I will be teaching with one of our pastors. The name of the class is "Swinging Swords, Raging Lords, Great Rewards". Kind of a screwy title but it should be a good class. I was kind of hoping Deb would be back to attend the class and keep me in check. Does not look now like that is going to happen so I will have to do my best to keep it on the mild rather than the wild side. For now I will tell you that the swinging sword part is a reference to the Biblical story in Genesis 3 of God putting a couple of angels swinging swords at the entrance to the Garden of Eden to prevent Adam and Eve from going back in. It does seems a little like one of those angels got a little lost and is now hanging out at the door of this doggone hospital room. We are both kind of anxious for the "great reward" part of this whole deal. It will come!!! Thanks for staying with us.
Stan
Wednesday, January 2, 2013
New Years no Fears some Tears
Stan Here:
At least new years day did not go by without something exciting. The hospital made arrangements for Deb to go home for a few hours. They arranged the medication in such a way that Deb could go home for a short time on New Years day. We used this time to arrange our annual gift exchange of our family. I picked up Deb at 12:30 and she had to be back here by 6. She did quite well and handled the car ride well. She walked in the house and did some quick wrapping of presents as she thought my presentation of the gift (the box method) was not indicative of what things should look like. I was quite proud that the house looked pretty good. I had put a spit shine on the place and thought I had the place looking pretty good upstairs and down. To give you some idea though Deb's energy level was not good enough to go upstairs and check that out. After the gifts were wrapped (thrown in gift bags) Deb spent the rest of the time sitting down and enjoying the exchange. By the end of the time we could tell that her energy level indicated it was time to go back. What is happening is that all of her nourishment comes via IV and you could tell why they only allowed 4 hours away. Also they had to provide various medication for pain and nausea before she left and you could tell that was wearing thin as the afternoon went by. It was kind of like being let out of jail for a day of what sometimes feels a life sentence so when it was time to go back there were a few tears. However the sensation was clear that it was time to return. All in all it was a nice afternoon. At the end we took the tree down and put the ornaments away. All the kids helped with this and made short work of it. I sense that Deb has never really trusted me with the Christmas ornaments. She wraps each one and each year has a few new ones all of which are precious to her. There are so many that the tree tipped over once when she was gone. Mieke came over and had helped me put them all in the right place and only a few busted in the fall. Maybe no more live trees at our house.
So I have the New Years, few tears part but how about the no fears. As far as we can tell the doctors are very positive about the thought that every thing will start working the way things should at some point. There seem to be no medical concerns, infections or any else standing in the way of anticipating a full return to the world of normal at some point in the future. So while it is true that our patience is being tested it is also true that we remain confident that this will work. At least that is what they tell us. Now you might sense some trepidation in the tone of that sentence and if you do you are right. After this long it seems like Time is just a magazine and does not really have to do with days and hours anymore. Forever seems like a word that fits our feeling better. Deb got in the sermon at church the other day when he came to the part about long suffering. I am not sure it is ever all that good to be in sermons. I think someplace in the Bible they talk about test taking 40 days and 40 nights. If that is what it is we got it. Perhaps that is when this thing will end. 40 days and 40 nights. We are on day 37 right now. Might be kind of nice to think about getting out then. At least I will understand that sermon better the next time they preach it. 40 days and 40 nights. Let's all pray for that goal.
Stan
At least new years day did not go by without something exciting. The hospital made arrangements for Deb to go home for a few hours. They arranged the medication in such a way that Deb could go home for a short time on New Years day. We used this time to arrange our annual gift exchange of our family. I picked up Deb at 12:30 and she had to be back here by 6. She did quite well and handled the car ride well. She walked in the house and did some quick wrapping of presents as she thought my presentation of the gift (the box method) was not indicative of what things should look like. I was quite proud that the house looked pretty good. I had put a spit shine on the place and thought I had the place looking pretty good upstairs and down. To give you some idea though Deb's energy level was not good enough to go upstairs and check that out. After the gifts were wrapped (thrown in gift bags) Deb spent the rest of the time sitting down and enjoying the exchange. By the end of the time we could tell that her energy level indicated it was time to go back. What is happening is that all of her nourishment comes via IV and you could tell why they only allowed 4 hours away. Also they had to provide various medication for pain and nausea before she left and you could tell that was wearing thin as the afternoon went by. It was kind of like being let out of jail for a day of what sometimes feels a life sentence so when it was time to go back there were a few tears. However the sensation was clear that it was time to return. All in all it was a nice afternoon. At the end we took the tree down and put the ornaments away. All the kids helped with this and made short work of it. I sense that Deb has never really trusted me with the Christmas ornaments. She wraps each one and each year has a few new ones all of which are precious to her. There are so many that the tree tipped over once when she was gone. Mieke came over and had helped me put them all in the right place and only a few busted in the fall. Maybe no more live trees at our house.
So I have the New Years, few tears part but how about the no fears. As far as we can tell the doctors are very positive about the thought that every thing will start working the way things should at some point. There seem to be no medical concerns, infections or any else standing in the way of anticipating a full return to the world of normal at some point in the future. So while it is true that our patience is being tested it is also true that we remain confident that this will work. At least that is what they tell us. Now you might sense some trepidation in the tone of that sentence and if you do you are right. After this long it seems like Time is just a magazine and does not really have to do with days and hours anymore. Forever seems like a word that fits our feeling better. Deb got in the sermon at church the other day when he came to the part about long suffering. I am not sure it is ever all that good to be in sermons. I think someplace in the Bible they talk about test taking 40 days and 40 nights. If that is what it is we got it. Perhaps that is when this thing will end. 40 days and 40 nights. We are on day 37 right now. Might be kind of nice to think about getting out then. At least I will understand that sermon better the next time they preach it. 40 days and 40 nights. Let's all pray for that goal.
Stan
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