This one was brutal. I had surgery on the 8th and this was another 14 hour enormity. I don't recall many of the details but the tumors had once again entangled the intestines and a total of 64 or so tumors were removed. I also got the new experience of coming out from surgery with an intubation, doing all my breathing and preventing me from talking.
I went nuts. I was losing my mind. I thought I was in another part of the world, I could not identify truth from fiction and I weaved extraordinary story lines in my mind. They had to restrain me to keep me from pulling out the tube and, once the tube came out, I then went psychotic again an pulled out my NG tube, forcing them to put in another one.
I have never felt so helpless or scared in my life. What is a person if not for their mind and I could not find mine.
Additionally, my left arm has gone partially numb from about mid-forearm through the thumb and first two fingers. It is weak and I am working on trying to restore it to normalcy (or something close to it).
We finally got moved out of ICU yesterday and are now in a nice comfortable 5th floor room. I am still having extreme trouble sleeping and focussing but things are slowly moving forward. I have started clear liquids and hope to progress to full liquids soon.
That is about all I can write at this point but want to let everyone know what we are slowly progressing. Returning home will probably not be for a week or more yet but I am up and I can walk. Looking forward to seeing everyone soon!
--Ron
Wednesday, June 17, 2015
Sunday, June 7, 2015
I think we are go for surgery this time
Everything is looking up for a surgery on Monday. Dr. Boudreaux came through on Friday and said that he is pleased with how things are progressing. The Horrid NG tube has drained off over 2 liters of liquid which means that he will have that much less in my bowels to fight through. He also took out the chest tube on Friday which has made my days a bit more comfortable.
The NG tube is still my nemesis. I have had it in since Tuesday night and not a single day has been pleasant with it. It makes swallowing hurt. I have trouble talking because that hurts as well. If I lift or turn my head much at all, it hurts. I know I will have it in surgery and will wake with it. If history holds true, it may not come out until Thursday.
For the surgical consent, his list of goals included freeing up intestines, possible resection, possible tumor rebulking, possible ureter repair or rerouting, and possible colostomy reversal. Friday also included a CT of the rectum to see how difficult reversal may or may not be. Everything he want to do would improve my situation from eating, to digesting, to kidneys and to pooping. Hopefully he is successful and able to achieve a good portion of that list.
We have no idea what time surgery will be as we are the second surgery of the day and need to wait for the OR. Again, it will be almost painful to wait these hours since you don't know when they will end and there is always the fear that things will get too late and they will delay it again. I don't think this is will be the case but I cannot stop thinking about it.
Today, the other surgeon that will be assisting Dr. Boudreaux came through and I did not catch his name but he appears new to the neuroendocrine clinic. Surgery should be late morning and it is going to be a long wait.
Obviously, I will not be posting again for the next few days so I want to refer you do my wife's caring bridge site where she will be posting updates as to progress both for her and for me in these next days. Feel free to send some good vibrations her way as there is so much she wants to do to help even though there is nothing she can do.
The NG tube is still my nemesis. I have had it in since Tuesday night and not a single day has been pleasant with it. It makes swallowing hurt. I have trouble talking because that hurts as well. If I lift or turn my head much at all, it hurts. I know I will have it in surgery and will wake with it. If history holds true, it may not come out until Thursday.
For the surgical consent, his list of goals included freeing up intestines, possible resection, possible tumor rebulking, possible ureter repair or rerouting, and possible colostomy reversal. Friday also included a CT of the rectum to see how difficult reversal may or may not be. Everything he want to do would improve my situation from eating, to digesting, to kidneys and to pooping. Hopefully he is successful and able to achieve a good portion of that list.
We have no idea what time surgery will be as we are the second surgery of the day and need to wait for the OR. Again, it will be almost painful to wait these hours since you don't know when they will end and there is always the fear that things will get too late and they will delay it again. I don't think this is will be the case but I cannot stop thinking about it.
Today, the other surgeon that will be assisting Dr. Boudreaux came through and I did not catch his name but he appears new to the neuroendocrine clinic. Surgery should be late morning and it is going to be a long wait.
Obviously, I will not be posting again for the next few days so I want to refer you do my wife's caring bridge site where she will be posting updates as to progress both for her and for me in these next days. Feel free to send some good vibrations her way as there is so much she wants to do to help even though there is nothing she can do.
Tuesday, June 2, 2015
Ready, Set, Delay...
I don't know if you can imagine how hard it is to write this post. We arrived in NOLA on 5/25, expecting to have surgery on 5/27. That was then delayed to tomorrow, 6/3 so that I could get stronger before the procedure. Well, I am not stronger enough yet and we are delaying once more.
Right now, the target is Monday June 8th and there are a number of reasons. First, my prealbumen blood level is lower than desired. Prealbumen is a measure of nutritional sufficiency and mine is not as high as they want prior to surgery. Second, I am severely anemic right now with a hemoglobin level of 8. I don't know how it dropped so crazy low but that is a very bad place to be in and they are working hard to raise that with EPO shots and iron infusions. Finally, I have developed a pneumothorax.
You may remember my post about putting in the chest tube to drain the pleural efflusion. Well, it is draining but, at the same time, a non trivial amount of air has taken its place and this is what is known as a pneumothorax. Today, they swapped out the old hose for a larger one, hoping this would help and they are going to have a cardio-thorasic surgeon look at the x-rays to see if there is something he can do to help.
For me, all this means is yet another delay. Five more days. The days keep getting tacked on and I don't know when it will end. We could get to Monday and he could still want to delay again. I know he is weighing the risk of surgery versus the potential with an improvement in health but I am having a hard time handling it.
Tonight, I understand I will finally be getting the NG tube. I have dreaded this but he will be giving some additional meds to help me through the procedure of getting it inserted while conscious. I don't know what other violations I will be experiencing over the next few days but a lot can happen in 5 days that I just can't imagine.
Five more days. Stephanie keeps me upright while I am here struggling and the thought of returning to my kids must be kept up front of my mind as well. I will make it but it is getting exceptionally difficult. I appreciate all the emails of support and well wishes and hope I can bring better news on Sunday night.
Right now, the target is Monday June 8th and there are a number of reasons. First, my prealbumen blood level is lower than desired. Prealbumen is a measure of nutritional sufficiency and mine is not as high as they want prior to surgery. Second, I am severely anemic right now with a hemoglobin level of 8. I don't know how it dropped so crazy low but that is a very bad place to be in and they are working hard to raise that with EPO shots and iron infusions. Finally, I have developed a pneumothorax.
You may remember my post about putting in the chest tube to drain the pleural efflusion. Well, it is draining but, at the same time, a non trivial amount of air has taken its place and this is what is known as a pneumothorax. Today, they swapped out the old hose for a larger one, hoping this would help and they are going to have a cardio-thorasic surgeon look at the x-rays to see if there is something he can do to help.
For me, all this means is yet another delay. Five more days. The days keep getting tacked on and I don't know when it will end. We could get to Monday and he could still want to delay again. I know he is weighing the risk of surgery versus the potential with an improvement in health but I am having a hard time handling it.
Tonight, I understand I will finally be getting the NG tube. I have dreaded this but he will be giving some additional meds to help me through the procedure of getting it inserted while conscious. I don't know what other violations I will be experiencing over the next few days but a lot can happen in 5 days that I just can't imagine.
Five more days. Stephanie keeps me upright while I am here struggling and the thought of returning to my kids must be kept up front of my mind as well. I will make it but it is getting exceptionally difficult. I appreciate all the emails of support and well wishes and hope I can bring better news on Sunday night.
Subscribe to:
Posts (Atom)