Ben Passed Away

Just got the call. Ben passed away at 1:07 AM this morning June 15, 2011.

Tuesday Update For Ben

Today I did the hardest thing I've ever had to do in my entire life. I gave my permission to take Ben off of the support medications. We left him on the respirator because we just could not bring ourselves to "pull the plug". He was still alive when we left the hospital, but his heart rate was very erratic and his blood pressure dropped dramatically. The doctors seemed to think that just taking him off the medications will cause him to slowly pass on. His sister, her husband and Ben's brother were there along with me and my brother. We had a social worker and the hospital chaplain with us and we prayed and cried while we gathered around his bed, all of us hugging. I hugged and kissed Ben and told him how much I loved him and what a wonderful husband he had been to me. I thanked him for the 31 years we spent together as a married couple plus the 6 years we were best friends before we were married. I told him it was alright now to stop fighting and he could now give up and go peacefully. Both his brother and sister really took it bad. They both had to leave his room. Keith (my brother) and I stayed awhile longer and I continued to hug and kiss Ben and tell him I loved him and how he will remain in my heart forever. I have cried so much today and I am crying as I type this. My social worker made some phone calls for me to some mortuaries and I decided to go with one that the hospital deals with a lot. The were the most inexpensive and I know for a fact that Ben would NOT want me to spend a lot of money because he always talked about what a rip-off funerals, etc. are. I won't have a funeral for him. In a few weeks I will plan a "celebration of his life". I plan to have him cremated and take eventually take them up to Ferndale, CA (his favorite place) and scatter them there. I will keep a little bit of the ashes for myself. My brother Keith is here with me and we are waiting to hear from the hospital. If we do not hear something tonight, we will go there again in the morning and sit with Ben. I want to thank everyone for all of the prayers and kind words.

Monday Update For Ben

I don't know how to send this update. We were told by the doctors today that Ben is not going to survive as all of his organs have started to shut down. His kidneys are failing, his liver is failing, his intestines have already failed. His immune system is gone. His body cannot sustain a normal blood pressure without support drugs. They even said his mind is probably starting to go due to the other organs failing. We have no idea how long he has left. Linda was with me thank goodness when they gave me this news. I called Ben's brother Lanny and he came out right away. My brother Keith also came up to the hospital right away. Then I called Ben's best friend and he came up too. My brother is going to stay with me a few days and Ben's sister Donna is coming down from Las Vegas to see Ben. They should be in town tomorrow sometime. We were told by the dialysis specialist that doing dialysis would not make any difference at this point. It may even make him go faster because he is not stable unless he is on support medications and your body must be able to support the blood pressure on its own without support medications before they could even do the procedure. Eventually we will have them stop giving him the support drugs and he will eventually pass. I am totally numb.

Sunday Update For Ben

Not a good day. Ben was awake but very out of it. He told me he was cold even though he had 3 thermal blankets on him. I'm sure that's caused by his anemia. He didn't respond to me much after that. When I got there his vitals were…Heart Rate 96 (this was up from yesterday which is not good). Respiration 24 (also up from yesterday which is not good). Blood Pressure 106/51. Blood Level still 7.5 and as I said, this should be around 11 to 13. His temperature was near normal. They were waiting for a unit of blood to give him which came about an hour after I got there. His nurse Nida told me that his main problem right now is his kidneys. He's still not putting out much urine. His creatinine level is 5.5 milligrams but normal is 0.6 to 1.2 milligrams. His limbs, hands, feet and face looked swollen today from him holding water. Nida told me he is not bleeding from anywhere, but his blood level just does not seem to want to go up. He is not on any pain medications. Dr. Han (ICU doctor) came by to check on Ben. He told me they have called a dialysis doctor to evaluate Ben to see if they need to give him what they called "acute dialysis". From what I've read online acute kidney failure is usually reversible. Dr. Han is very concerned that Ben's stomach is still distended even after the last surgery. They just cannot seem to figure out what is causing this problem. Dr. Rupp (Surgeon) came by. She said that been "doesn't seem to be turning the bend". Didn't like hearing this. Both doctors said that his kidneys are their main concern right now. Ben's B/P kept dropping while I was there. He was not on the B/P supporting drugs. It got down to 66/37, so they ordered another unit of blood, which made two unit today so far. They also put him back on the B/P supporting drugs. These two things brought his B/P back up and they said that if it stayed up, they would take him off the drugs again because the drugs cause organ failure and do not make the kidney problem any better. Nida explained to me in detail what happens when they put a person on dialysis. She said Ben would not be in any pain if and when they do it. She said once they do it, they will continue to monitor his kidneys and blood levels to see if it needs to be repeated. He was so weak today and just starred off into space the entire time I was there. It was all I could do not to fall apart in front of him. I asked when the dialysis doctor would be there, but they didn't know. They even said it might not be until tomorrow, so I left at 1:00 PM and they told me that they would call if there were any changes, plus if the do decide to do dialysis, they will have to get my consent. When I left his vital were…Heart Rate 98, Respiration 32, Blood Pressure 105/53, Temperature 97.6°.

Saturday Update For Ben

Ben was awake when I come into his room and responsive to me and his nurse. His vitals were half good, half bad. His heart rate was 85 and his breathing was 19, but his blood pressure was 73/38 (but they had just repositioned him and that lowers it for a few minutes and usually comes right back up). His body temperature was only 94.6° which is "hypothermal". He is anemic so they were giving him another unit of blood while I was there. His blood level is 7.5 and it should be 11 to 13. He is no longer on the blood pressure raising medications. They really want his B/P to get normal on its own as much as possible because the meds are not really good for you. They can weaken your kidneys and Ben's kidneys are already not functioning as well as they should. To raise his body temperature, they put several thermal blankets on him and then put a full body heating pad on top of them. He kept pushing them off saying he was hot, but when they checked his temperature, it had only gotten up to 95.9° before I left. I think he didn't like the weight of them on his body. They put a rectal thermometer in him to monitor his temperature while they have him under the heating pad. Their goal is to get him up to 99.5°. His nurse Alana told me that his abdominal pressure is good even though I thought his belly looked a little bloated. She said he is in the "acceptable" range. She said he is still getting stool in his colostomy bag. The only problem they are having with the bag is that it doesn't want to stay adhered to his skin. Ben has always had a problem with any kind of adhesives irritating his skin and causing it to turn red. Because of the skin irritation, the adhesive on the bag won't stick to his skin. It keeps coming lose and then the bag leaks. He still is not getting much urine so his limbs, hands and feet are still bloated. They are giving him meds to try to make him pee more. Ben was actually more alert today than he was yesterday. He kept getting mad at me because he would pull the thermal blankets off and I'd put them right back on him, so he'd "silently" yell at me and give me dirty looks. I'd just laugh at him and tell him that it was good for him to get mad because maybe it would help his B/P go up plus it shows that he is having some kind of "feelings" and is reacting to them. They gave him an injection of Vitamin K to try to help his blood thicken up some. Around 12:30, Ben started to fall asleep so I decided to leave. I'd been there for 4 hours by that time. When I left his vitals were….heart rate 84, breathing 19, blood pressure 93/51.

Friday Update For Ben

Ben was awake when I came in this morning, but not really very responsive. When I first came in, his blood pressure was 113/49, his heart rate was 93 and his breathing was 24. No fever today, temperature was 96°. I think it's a little low due to his low B/P. I thought his belly looked a little bigger today and to me it felt a little harder, but Nick (Ben's nurse) said that maybe it looked bigger to me due to all of the dressing on the incision plus the colostomy bag under Ben's gown. That could be because they did have a lot of dressing on the incision. Nick also said that they are constantly monitoring Ben's abdominal pressure and it has been staying within the range it should be. It looked like there was some blood in Ben's urine. I mentioned it to Nick and he said he's been noting that on the computer for the doctors. Ben didn't seem to be focusing today, he just kept staring off into space. He acted like he was trying to tell me something but I could not read his lips to know what it was. The are still giving him antibiotics. They were giving him a unit of blood just before I left and they are still trying to wean him off of the blood pressure meds that help raise his B/P. When I left at 12:30, they had just given him some more Ativan to calm him down some because he was a little agitated. I just hope it does not knock him out as much as it did the other day when he didn't wake up for over 24 hours. His vitals just before I left were B/P 113/58, H/R 93 and breathing 30.

Thursday Update For Ben

Ben's eyes were open when I came into his room and he squeezed my hand when I took it. He was still a "little" out of it, but he was a little responsive today. When I got there, his blood pressure was 100/52, his heart rate was 100 and his breathing was 20. He had no fever. Last night they had taken him off of the B/P meds to raise his pressure, but they had to put him back on it. But again this morning after I got there, they took him off of it again. Some of the time, he would just stare off into space, but when I would ask him something, he would nod or "mouth" yes or no. He said he was not in any pain. Ben's limbs are still somewhat puffy. I asked Nick (his nurse) if he was urinating more than he was, and Nick said a little, but not that much. Our social worker Jennifer came in this morning as did Robin the hospital chaplain. Lanny (Ben's brother) came by around 11:00 AM. I was just so happy to see that he was awake this morning. I didn't sleep well because I was so worried about the fact that he had not come out of it when I called his nurse last night. Dr. Rupp (the surgeon) had told us that the first few days after surgery would be the most critical and Ben has seemed to make it through those first few days.

Wednesday Update For Ben

Ben was asleep when I came into his room this morning and he did not wake up in the 3 hours I was there. His nurse Lisa said that she had given him some Ativan yesterday evening and that it must have still been in his system because he is not urinating very much so his body is holding liquids and the Ativan would come out in his urine. I could not get him to even open his eyes. His heart rate was 96, his breathing was 22 and his blood pressure was 110/65. His arms, hands, legs and feet were still a little puffy, but as I've said, he is not urinating very much. His blood levels were down due to all of the fluids they are giving him due to his kidney malfunctioning, so they were giving him a unit of blood while I was there. His nurse Lisa told me that he did come back positive for MRSA but that it is inactive right now. It is in his nose. I was told he's probably had it for a long time, but they always test for it in ICU and that's when they discovered it. Because of this, anyone who goes into his room must wear a gown and rubber gloves. I picked up a booklet in the ICU called "Living with MRSA" and I've been reading up on it and researching it online. As long as it stays inactive, he should be ok. It's been around forever, but was not really discovered until the 1960's. It's very common in hospitals and a lot of nurses and doctors are even carries of it. My advocate (Lisa) from my attorney's office came by to see Ben today.

Tuesday Update For Ben

Linda and I got to Ben's room around 9:45 AM. He was awake and alert. You could tell he knew we were there and he was trying to communicate with us some. They told me that he was not on any pain meds and that he told them he does not have any pain, which is good. We noticed that he is off of a lot of the medications and fluids they had him on right after his surgery. His color was good. His vitals are improving every day. He kept trying to "mouth" things to me and some of it I could understand, but most of it I couldn't. The chaplain came in and prayed with us again. When his friend Ed showed up, Ben knew it was him and "mouthed" a greeting to him. When it got to be around 12:00 noon, I asked Ben if he was getting tired and he shook his head no, then I asked him if he wanted us to leave and let him rest and he mouthed "no", so we stayed another 15 minutes when the nurse came in and said she was going to empty his colostomy bag. I figured that was a good time for us to go. Today his numbers were:

Heart Rate = 100
Breathing = 30
Blood Pressure - 119/58
No Fever

We kept watching the monitor and sometimes his heart rate got down around 95 or 96. His breathing got down to 24 or 25. His blood pressure varied, but was still staying up pretty good. Saw the surgeon out in the hall when we were leaving, but she was busy with another doctor so did not get to speak with her. Ben seems to be improving every day. Hopefully he will be out of ICU and back up in DOU soon.

Monday Update For Ben

Got to ICU at 9:40 AM. Ben was a little bit awake and I took his hand and told him I was there and he squeezed my fingers. He looked like he is starting to hold some fluids again…not in his belly but in his arms, hands, legs and feet. They are a little bloated. I'm sure this is because his kidneys are not functioning at 100% again. The are giving him drugs to try to make him pee more. This morning his B/P was strange. The top number was very good, but the bottom was very low. His nurse Steve told me that it is much better though. Ben's heart rate was running between 110 and 115, his breathing was running between 25 and 30. His belly does not appear to be bloated now. He had a very low grade fever of 99.3° which Steve called "borderline". The hospital chaplain Robin who was praying with Ben up in DOU came in and prayed over Ben this morning. Robin is really a nice guy. Our social worker Jennifer came in first thing too. She said we were the first on her list this morning. Someone shaved Ben's beard, but he's got a little "Hitler mustache" going on right now. Don't know why they did not shave that off. Steve said that Ben seemed to be gasping for air, so he wanted to let him sleep and try to calm him down some. He remembered that when Ben was in ICU before that I had asked them not to give him too much morphine, so instead Steve game Ben some Ativan. Ben went right to sleep and slept most of the time I was there. They are still lowering the dosage of the blood pressure drugs that help to raise his B/P because it keeps getting better. When I left at 12:30 PM, Ben's B/P was 123/57. His breathing was 23 to 26 (normal is in the mid to high teens). His heart rate was 112 to 115. So he is getting better each day.

Sunday Update For Ben

Got to ICU at hospital around 8:30 AM. Ben squeezed my hand when I asked him to let me know if he knew I was there. Then he went to sleep for a little while. His heart rate is still pretty fast but much better than yesterday after surgery. After surgery it was 135 and today it was around 118. His blood pressure is still low, but coming up slowly. His nurse Lisa told me his kidney function is down again. I'm sure that's because of all of liquids that left his body yesterday during surgery because the surgeon had told me he seemed a little dehydrated afterward, plus Lisa told me that the B/P lowering medications cause you to be dehydrated. She said that hopefully his kidney function will get better once he's off those meds. He had a slight fever (99.6°) and the ICU doctor had ordered some antibiotics for him. Lisa said that they drew some blood to check for any infections. They have a little monitor on him that checks his abdominal pressure for his colostomy bag. Lisa said the bag seems to be working pretty good, but I noticed that they are still draining some fluids from his stomach through the NG Tube also. They lessened the dosage for his Dopamine because they said his B/P was better. Ben was moving around a lot and trying to communicate. He let me know that he was having a lot of pain in his stomach, so I told the nurse and she gave him a shot of morphine. I know he and I do not like them to give him morphine, but right now, I know he needs it for the pain. Ben's sister Donna showed up a little after 1:00 PM with her daughter Beth and around 1:45 PM I left to come home. Donna was still there, so I don't know how long she stayed. All in all, I think he was doing pretty good for only being 24 hours after the surgery.

Saturday (Surgery) Update For Ben

Ben's sister (Donna), niece (Beth) and I got to the hospital around 6:30 AM. We had to be there before 7:00 AM so I could sign the surgical consent papers. When we got there I asked Ben if they had told him he was going in for surgery today and he said no. I did not go into detail with him, but just told him that they were going to do the surgery to get rid of the blockage in his colon and he said "good". We sat with him until 8:00 AM when they took him downstairs to the OR. His sister and niece went to the waiting room and I went with Ben down to OR until they took him in and then I went out to the waiting room. Ben's brother showed up awhile later and my friend Judy Arbogast also showed up to wait with us. The surgery took about 2 hours. Dr. Rupp (surgeon) came in and she told us that Ben had Diverticular Disease. I already knew he had diverticulitus. I have researched this condition online. It is when there is inflammation of the diverticula. This causes erosion of the diverticular wall due to increased pressure in the gut. Dr. Rupp said that this condition causes Ben's colon and bladder to be pushed together causing a blockage in his intestines. She had to remove the last part of his lower intestines and attach a colostomy bag to him. Also, when they opened him up and removed all of the fluid that was in his belly, this cause his blood pressure to drop drastically so they had to stabilize him in Recovery before Lanny (Ben's brother) and I could go in to see him and before they could send him down to ICU to recover. She also told us that the next few days will be extremely critical for him, but she seemed cautiously optimistic. When we were allowed to go in and see him in recovery, his eyes were open and he was moving around. I took his hand and told him to squeeze my finger if he could hear me and he did. He also tried to talk to us a little and was able to "croak" a few words out. They moved him down to ICU around 2:15 PM. Donna and Beth had already left to attend Donna's grand-daughter's birthday party and Lanny left around 2:30 PM. It took them another 45 minutes to get Ben hooked up to everything in ICU and ready for me to come in and see him. I got in to see him just before 3:00 PM. He was still moving around and he looked at me when I came in. I told him that I was just checking on him before I left to go home because it had been an extremely long day for me and I had not gotten any sleep last night, so I needed to get home and rest. He croaked "Go Home" to me, so I kissed him, told him I loved him and he said "I love you too" and I left to come home.

Ben's Surgery

I am very upset and feeling very alone right now. Dr. Rupp, the Kaiser surgeon called me and said that I had to decide if they should do the surgery on Ben for his blockage. She told me that they will have to do a colostomy or a diverted colostomy on him, which means he will have a colostomy bag. The surgeon told Ben's brother that she feel's Ben should survive the procedure, however, she said that the first few days of post-op will be the critical time. She said there is no guarantee that the surgery will help him, in fact she said there is a possibility that it could make him worse., but if he does not have it, he will remain as he is right now and that is no better because he's getting weaker each day. She told me the best scenario is that he is able to tolerate tube feeding and eventually be taken off the ventilator and IF he can swallow, he would eventually be able to eat solid foods, but she is skeptical about that. The worst scenario is that he would not make a turn around to get better and maybe even die. I feel we need to at least try the surgery because either way I feel he could die. She said if he makes it through the critical days and eventually makes it off the ventilator and can swallow, that one day they would be able to maybe re-attach the ends of the colon and take the colostomy bag away, but she said that it's a 50/50 chance that that could happen. I am so upset. I've been crying my eyes out, but we have scheduled the surgery for 8:00 AM tomorrow. I have to be at the hospital before 7:00 AM to sign the consent papers, which should be no problem because I know I will not sleep at all tonight. I am here at home alone and there is no one who can come to stay with me. My friend Linda is out of town for the weekend. Ben's sister is in town for her grand-daughter's birthday and I'm hoping that she will be able to come and stay with me tonight. Waiting for a call back from her. Please pray for my dear sweat Ben, that he will survive this surgery and the next few days and that he will one day be able to lead at least some kind of a semi-normal life. This is just killing me.

Friday Update For Ben

Ben seemed very weak today. He can talk, but you can tell he really feels bad. He asks me to give him a "barf bag" every day because he always feels nauseous. He lies there in bed holding it like a security blanket. He never uses it though. He gets more crabby each day, but I know it is because he does not feel good. He keeps telling me that he feels like he's going crazy and he does not know how much longer he can take this. I keep telling him that he will eventually get stronger and get well. The physical therapist came in but Ben did not want to work with her. She said he really looked tired and that she would try to come back later to work with him. She told me she did work with him yesterday. I finally spoke with Dr. Markarian (this week's rotation doctor) and he is nothing like Dr. Manek. I wish so much that we could have kept Dr. Manek. Dr. Markarian told me that the surgeon (Dr. Rupp) has to analyze the results of the procedure from yesterday and then evaluate Ben before they know what they are going to do. Dr. Markarian said he does not have the results back from yesterday yet. Meanwhile, Ben gets weaker in my opinion, even though his vitals are still very stable. He just seems to tired. Dr. Markarian told me that Dr. Rupp should be by to see Ben sometime today, but he had no idea what time that would be. I stayed until 1:30 PM and never saw her.

Thursday Update For Ben

Ben was asleep and weak when I got to his room this morning. When he woke up, he asked me to find his nurse because he felt nauseous again. I told him that hopefully when the "fix" the blockage, his nausea with stop. Dr. Manek came in and said that they were going to do another sigmoidoscopy today to do a biopsy of whatever is causing the blockage, but he had no idea what time they were planning to do it. He said they will put Ben completely out for this procedure. He said that the biopsy will tell Dr. Rupp (the surgeon) what she needs to do. Around noon, Dr. Shantha came into Ben's room. She is still a "Kaiser Doctor" and comes by the hospital every now and then, but this was the first time I'd see her there. The first thing she said was "I told you there was a blockage". She told me that she was so glad that they finally found it and that they feel they can do something about it. She also told me that she still does not feel that his liver is as bad as they have been telling me. That was why she had wanted them to do a biopsy on the liver several weeks back. She said his liver may have a "slight" problem, but she feels that most of the problem is from whatever the blockage is. They don't know if it is a tumor, a polyp or even some scar tissue that is causing the blockage and this is why they are going to do a biopsy on it. Dr. Shantha said that after the surgery, Ben may have to be back on the ventilator because he is still very weak and she says she feels the hospital took him off of it too soon. She has always said, and still says that because of the size of his belly and the pressure on his diaphragm and lungs that breathing on his own is making him weaker and is very hard on him. But she told me that once they fix the belly problem and he gets back over to All Saints, she will get to work on getting him off the vent again and getting the physical therapy he needs to get back on his feet. Around 12:30 PM, Dr. Manek came back in and said that he still did not have a time for the procedure today, but that he would call me at home when the did it. He said he "might" know something from the biopsy today, but he's thinking that it may not be until tomorrow. He said Dr. Markarian will probably be with Ben tomorrow. I have never met this doctor. Ben wanted me to stay around while they did the procedure, but Dr. Manek told him that they still had no idea of what time it would be done and told Ben it was ok for me to go home. Ben slept most of the time I was there today, but he woke up around 12:45 PM and told me he wants me to try to get there first thing in the morning instead of going to my Caregivers Support Group over at the senior center because he wants me to find out what they found from the procedure, so I told him I'd skip my group this week and be there around 9:30 AM tomorrow.

Later Tuesday Update For Ben

I was waiting for Linda to come back so she and I could go for a walk and just before we left, I got a call from Dr. Manek. He had just gone to speak with one of the Dr. Zweiban (GI Doctor) about me asking for them to give Ben another colonoscopy. Before he said anything, the Dr. Zweiban said he had an idea. He said that since the Barium still had not gotten down into Ben's lower digestive tract that he could do a sigmoidoscopy which ONLY goes into the lower part of the colon and check to see if he saw anything in that area. They are planning to do it tomorrow morning in Ben's room. They said I could be there if I wanted, but I cannot get there before 9:30 AM because of the traffic and I'm not sure what time they are doing it, but maybe by the time I get there, they can tell me if they found anything. Let's hope they do.

Tuesday Update For Ben

Ben was in a pretty good mood today. Linda was very surprised at how well he seemed to be doing. He is still able to "talk" a little and his printing is getting good enough that I can read it. They came in to do another set of x-rays on his belly, so it's true that Dr. Manek is not giving up. The doctor came in and I asked him several questions. Asked him if I could "insist" on them doing another colonoscopy on Ben to see if they could find anything on the inside. He said that he would mention that to the GI doctor, but didn't know what his answer would be because yesterday the GI doctor said he did not think it would help much. I asked about them trying to give Ben Reglan again to see if maybe that would "kick start" his intestines. Dr. Manek said he will definitely consider that. Dr. Manek said that the Barium is still not all the way through the digestive track, but that since it appears that all of the intestines are what they refer to as dilated, and none of them appear to be collapsed that this indicates there is probably no blockage anywhere in them. So again they are saying that it may just be a matter of giving Ben's body time to make his intestines start working on their own again. But Dr. Manek did say that his is still Ben's strongest advocate for talking with the radiologists and the GI doctors and that he still does not plan on giving up. He really seems to be the type of doctor who wants to find the problem and help his patients. I asked him again about bringing another doctor in from another Kaiser or elsewhere with a fresh pair of eyes that might come up with any ideas. He told me he was going to mention that to the GI doctors and see if maybe they could bring someone in form maybe Kaiser Sunset, but that it is up to the "specialists" to make that decision, not him. The physical therapist came in and worked with Ben. She was very impressed because she said a week ago he could hardly bend his knees without her helping him and today she told him what she wanted him to do and he did it all by himself. We tried to sit him up on the edge of his bed, but his back and stomach started hurting him really bad so we had to put him back down. A couple of weeks ago I told Ben that Linda and I had gotten rid of all the beer he had in the house, including what was in his keg in the beer tapper. And no….we did not drink it. Actually most of it had gone stale. Anyway, today, out of the clear blue sky, he asked me if I had taken the keg back to Stater Brothers and get his deposit back. When I said I had not done that yet, he insisted that Linda and I leave early and go over to return it and get his deposit back, plus he told me that I need to take his C02 bottle back to Praxaire and get his deposit back on that. I'll have to check into that one. After returning the empty keg, Linda and I went to Backwoods Inn for a nice lunch. She had never been there and I had not been there in about 6 months, so it was nice.

Monday Update For Ben

Ben was awake and alert when I got to his room this morning. He could talk a little and his writing is getting better and I can read some of it now. Doctor Manek came by around 8:45 AM but he didn't have any news yet. Ben told me he felt a little nauseous so I told Katrina (his nurse) and she gave him something through his IV to settle his stomach. Ben started falling asleep around 11:30 AM. I was going to leave around 12:30 since I had gotten there so early, but Ben wanted me to find out if the doctor was still there and if he had any information for us yet. I found the doctor and he told us he was going over to Radiology to look at the x-rays to see what was going on. When he came back he told us that there is still no sign of a blockage, however Ben's large intestine is dilated. He told us the Barium (or Contact as they call it) still had not reached the lowest part of the intestine but as of right now, it appears that there is nothing blocking the intestines. The doctor called Dr. Melman in Gastro to ask him about another colonoscopy to see if they could find anything that way, but Dr. Melman told him that he didn't think it would show anything different. Dr. Manek says he is still very optimistic because of Ben's improvement in his other health issues like getting of the ventilator, having no more fevers, no more infections, and his blood tests show that other things have improved too, but basically it seems we are right back at square one. Dr. Manek still says he is not giving up, but I don't really know what else he can do. Ben became very upset and started to cry again. He asked me not to go home, and I was about to make the decision to stay there with him all night but then he got very agitated and was getting really mad at me because he kept saying he was hot and wanted to take his gown off. I got the nurse and she was trying to calm him down. I kept feeling like I should stay with him, but then I thought about the other night when I did stay overnight there and how I didn't get any sleep and didn't eat and how Ben kept waking me up. I kept thinking if I get sick then we will really be in trouble. I told Ben that I thought it was best if I came home and came back to see him in the morning. He agreed somewhat, but started to cry again and I told him I'd stay, but he told me to go home. I asked if he was sure and he said "GO BEFORE I CHANGE MY MIND". I felt so guilty when I was leaving him, but I felt like I could not be of any help to him in the state I was in and with him getting more and more agitated. I left his room crying. I cried all the way home and I'm still crying as I type this. I feel so bad for him and so lost and alone for myself. I don't know what to do. I feel as though our world has come down around us and I feel like I'm buried alive.

Sunday Update For Ben

Ben was alert when I got to his room this morning. Dennis (his nurse) told me that they were still doing x-rays so he still has not changed Ben's NG Tube to a larger diameter one. He will do that when they are done with the x-rays. They don't want any of the Barium to get suctioned out of Ben's body so they have the NG Tube clamped right now. Dr. Manek came in early this morning and told again about them still doing x-rays. He said he had just spoken with the radiologist. They have noticed that the Barium they gave to Ben is moving extremely slow through Ben's digestive tract which is not normal. Doctor said that last time the test was inconclusive because the Barium had absorbed into his body and never did get completely through the digestive tract. To me that means that the doctor on the case at that time should have done the test again. Anyway because it is moving so slowly at this time, Dr. Manek feels this may indicate a small blockage somewhere in the lower digestive tract. The Barium has not yet reached the portion of Ben's intestine where the original surgery was done back on February 28th. The doctor is thinking that maybe the problem is in that location. He said he sees on the x-rays that the surgeon at Henry Mayo used a staple to put the two ends of the intestine back together where they had removed 12" of it. I also discussed with the doctor about the fact that I was told by a Kaiser surgeon when Ben was in ICU that Ben has gallstones. I researched gallstones/intestines on the Internet and saw where the stones can break loose and go into the intestines. This can create what is called a "Gallstone Ileus". Sometimes they are not seen on x-rays but can be found with ultrasounds. I asked Doctor Manek if maybe this could be the problem and he said it is a possibility. I told him that I really hate the fact that he will no longer be on Ben's case after Wednesday and he told me that he feels he is getting very close to a diagnosis and that he hopes he will have an answer before Wednesday. Hopefully he will. Ben fell asleep after the doctor left and remained asleep the rest of the time I was there. For some reason he was pretty tired today.

Friday & Saturday Update For Ben

Sorry there was no update yesterday. I ended up staying overnight at the hospital with Ben because he was very upset when we spoke with the doctor yesterday, but he was better today. Kaiser does not have WiFi, so I cannot use my laptop there. Cannot believe that they are so behind and do not offer it. Friday I didn't get to the hospital until about 12:30 PM. Ben was very alert. He kept wanting me to scratch his leg because it was itching him so bad. He and I were using our "alphabet sheet" to communicate a lot Friday. Still off the ventilator, his breathing keeps improving. His belly was soft Friday but still very distended. They did a Cat Scan on it Thursday night, but found no blockage again. That was why Ben was so upset. We met Dr. Manek. he told us how disappointed he was that they did not find a blockage and that according to the surgeons, there is no surgical "fix" at this time. We were back at square one. Dr. Manek is consulting with the GI doctors and he is trying too hard to figure out why Ben's intestines are not working. He mentioned that if they end up finding nothing after all of the tests that Ben may be this way permanently, which made Ben start to cry. Dr. Manek told us that he was going to do another barium scan on Ben because he feels that even though they saw nothing blocking the large intestine that there still may be a blockage of some sort in the small intestine. They gave him the barium right away. Ben kept telling me that he wants to live. I told him to focus on that thought and fight with everything he has and never give up. He keeps telling me now that he will fight and try anything to get well and NEVER give up. All of this made me feel so bad because I had just given him a pep talk about how he will win this fight and he will get strong and well and come home. He worked with the physical therapist for about 20 to 30 minutes, but his heart was not in it. He stared blankly into space while she was working with him. When I mentioned that I should get home because of the holiday traffic, he told me he didn't want me to go home that he wanted me to stay with him all night because he was so upset. I called my good friend Lynn who came over to the hospital to sit with me and she suggested that I try to go home to secure the house, get a change of clothes and my meds while she stayed with Ben until I got back home. I had to take the surface streets because the freeway was bumper to bumper stand still. When I got back to the hospital, they were taking the second x-ray after giving him the barium. Just as they finished, he threw up and he kept telling me he was worried that it would affect the outcome of the test. I told him I'd check with the doctor, which I did. Doctor said that they just might have to do the test again, we'd just have to wait and see. They said they would take x-rays every 2 hours. Lynn left for home and Ben and I settled down for the evening. He asked me where I was going to sleep and I told him that the chair made out into a bed. He told me I could sleep in the bed with him. I had to explain to him that the bed was too small for the 2 of us. I was not able to even start getting sleepy until about 12:30 AM. Ben kept dozing off and I thought he has finally gone to sleep, but once I got into bed, he kept waking me up wanting me to scratch something for him, or he wanted to tell me something, etc. plus the x-ray technicians kept coming in and the nurses kept coming in. Around 2:00 AM, Ben had me turn the TV back on. He told me he usually leaves it on all night anyway. I think I got about 2 hours of sleep. I kept falling asleep while sitting next to Ben's bed and once he told me to go home, but I told him I wanted to see the doctor because once I went home, I would not be back until Sunday because I needed to get some sleep, pay some bills, do some laundry, etc. The doctor came in around 11:00 AM, but he still had not gotten results from the radiologist. We talked about what happens if the test showed no blockage again. He said that Dr. Melman in Gastro is "on board" with him for trying to find out what the problem is. He said that they would probably do another colonoscopy to see if there were any blockages, scars, etc. on the inside of the colon/intestine and to see if maybe there was some kind of problem at the site of where the original colon surgery had been done. He even said that Dr. Melman may even be willing to bring in an outside specialist if needed, but I won't hold my breath for that. I told Dr. Manek that I will really be sorry when he is no longer on Ben's case because I'm afraid all of this forward motion will stop. He said he is hoping that he finds something before Wednesday when his time with Ben is up and that he will do his best to see that whoever takes over will try to push just as hard to find what the problem is if he doesn't. He was going to change some of Ben's nutrition so that his body will not start to break down due to malnutrition and he was going to continue the Lasix and put a bigger diameter NG Tube on Ben so that the fluids being suctioned out will come out faster. Dr. Manek told me to go home and get some rest and that as soon as he hears something, he will call me. He said it might not be today, but not to worry if possible. I left for home after that. Normally you do not wish for a blockage to be found, but we need prayers that they DO find a blockage so that they will know what the problem is and they will be able to fix it.