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.

ATTENTION BEN'S PRAYER CIRCLE!

OK, everyone on Ben's prayer team, we need you to go into prayer mode again and also Praise God mode. I think maybe one of our major prayers is being answered. I've been praying that that God would bring us a doctor who would be more aggressive and maybe find what is wrong with Ben and "fix" it, even though so many other doctors have told us that there was nothing to "fix". I mentioned Dr. Manek in today's update and told you all what he said about " that if Ben's Ileus is not healing, that he feels they have not done their job". Well he called me back again awhile ago. He told me that he had been talking with one of the surgeons and they have decided to do another Cat Scan on Ben's belly. He knows that they did one 3 weeks ago and it showed nothing, but he is saying the same thing that Dr. Shantha has been saying all along, that something has to be wrong because this problem should not be continuing this long after the original surgery. He said he is thinking that there may be a very small blockage somewhere because he hears bowels sounds in Ben's belly but that they are high-pitched sounds and that usually means some kind of blockage somewhere. He told me he will have his surgeon look at the Cat Scan and hopefully they will see something this time. If they can find something wrong, they should be able to fix it. I asked him about doing surgery again because the other doctors had told me that Ben was not a candidate for surgery because he was so weak and on the ventilator. Dr. Manek says since they now have Ben off the vent, that they can get him stabilized for surgery and that it would probably be a laposcopic surgery which is more non-invasive. Dr. Manek told me that he is not one to just sit back and wait to see if the patient heals on their own. He told me he is not one to give up. I thanked him for that and for being aggressive when so many other doctors would not be. He asked me if I was 100% behind him and I told him YES!

Thursday Update For Ben

Ben kept getting very angry with me today. He tries to tell me something and I cannot read his lips so he gets mad. A couple of times I just walked away from him and told him that if he could not stay calm, that I was not going to even try to understand him. I even told him that I was disappointed in him when he acted like he not fighting and that he was giving up sometimes. He told he he's trying to fight. His belly was still soft and I am praying that it continues to stay that way. I was told that a physical therapist came in before I got there but Ben asked if they could come back later, which I'm happy to say, they did. I've asked that they try to come when I am there so that I can help them work with him and sometimes I can get him to work with them when he really does not want too. He is still doing very well on the Aeromist. I talked with Burt (respiratory therapist) about the steps in weaning him off the vent. He said they use the Aeromist until they fell Ben can breathe without the mist. He said they sometimes us a portable mask instead of the humidifier they are using right now. They then put a smaller trach in his neck which makes him start breathing through his mouth, then they cap off the trach which will make him start breathing through his nose again. Eventually they remove the trach and put gauze over the hole. The hole will eventually close up on its own just like a pierced earlobe when you do not put a stud in it for awhile. When the P/T came back, she worked with Ben for about 20 or 30 minutes. She tried sitting him up on the edge of his bed, but he complained about his belly hurting, so she only had him up for a couple of minutes. She then decided she wanted to try to have him sit up in a special reclining chair. About 5 people came in to move him from the bed to this chair, but then he complained how much his back was hurting him. They said it's because his back muscles are so weak from lying in bed for so long. They made him stay in the chair for almost an hour, but he was hurting so much he started to cry, so I got the nurse and they put him back into his bed. I kept telling them they should just put his bed in the chair position and sit him up that way, which they did about a month or so ago. His doctor right now is Dr. Manek. I did not meet him at the hospital today, but he called me when I got home. He said that he intends to keep Ben at the hospital for quite awhile and is going to take more x-rays and consult with the Gastro department again. He says that if Ben's Ileus is not healing, that he feels they have not done their job. It's about time someone said something like that. He said that he is thinking about clamping off the NG Tube as not much is being suctioned out right now and he wants to see if Ben's intestines will start pushing like they should. He said he will also be in contact with Dr. Shantha to keep her updated on what is going on with Ben. He will be with Ben for a week.

Wednesday Update For Ben

Ben is being weaned from the ventilator. Last night they put him on the Aeromist and turned off the ventilator, so he is breathing totally on his own! This is a major step to get him closer to coming home. Today his belly did not look like it had gotten any bigger and it is still soft, so I'm hoping the Lasix is helping to keep it under control. Dr. Kim spoke with Dr. Shantha and told her how well Ben was doing on the weaning and he said she was very surprised. They agreed to take it one day at a time to decide if and when he would be returning to All Saints, which I think is a very good idea right now while he is weaning.

Tuesday Update For Ben

Ben was on a weaning trial again this morning. He let me know that his belly still hurt him and that he was feeling a little nauseous. His belly was softer due to the paracentesis but still distended. I was told they took another 5.3 liters of fluids out yesterday. A physical therapist came in and worked with Ben for 20 minutes. Dennis (Ben's nurse) came in and gave Ben something to try to make his nausea go away. The respiratory therapist came in and told me that they kept Ben on the weaning trial yesterday for 8 1/2 hours and that he did very well. They had started him this morning at 7:30 AM and he was still on it when I left at 1:00 PM. The R/T said that if Ben continues to do this well, they will take him off of the ventilator and put him on a Aeromist. He told me that it is a portable device and that when on it, Ben would be breathing totally on his own, but that if need be, they could put him back on the ventilator at any time. So it appeared to me that the hospital was trying to totally wean him of the vent which is great. I didn't see Dr. Kim at the hospital today, but when I got home, he called me and said that he was thinking about sending Ben back to All Saints this afternoon. I told him he'd better call Dr. Shantha because Ben's belly still fills up with fluids every 3 or 4 days. Plus I said since Ben was doing so well on the weaning that I didn't want it to stop once he got to All Saints. Dr. Kim said he would call her. I called Moon (my social worker at All Saints) and told her that they would be getting a call and she transferred me to Dr. Shantha who had just spoke with Dr. Kim. She told him that she did not want Ben back if his belly needs to be tapped every 3 or 4 days plus she told me that she would not continue the weaning process if she didn't think it was time because she does things her way and Kaiser does things another way and they are NOT the same. Dr. Kim called me back and told me about his conversation with Dr. Shantha and I told him about what she said to me and he decided to keep Ben at the hospital for a few more days to wean him from the vent there and to see if the Lasix they are giving him will stop the fluids from staying in his belly. I don't know what will happen if the fluids keep coming back because Dr. Shantha has made it very clear that she will not take Ben back if she has to keep sending him back and forth to the hospital every 3 to 4 days for a paracentesis.

Monday Update For Ben

Arrived at Ben's room at 9:35 AM. He could not talk today, but communicated to me that his belly hurt. His belly has gotten very hard again. His nurse Manjit came in and turned on the suction that brings the liquids out of his belly through his NG Tube and orange stuff (about the color of orange juice) started coming out and it looked thick. I was surprised to see that they had him on a weaning trial today. He was on it from about 8:15 AM and was still on it when I left. The respiratory therapist kept coming in to check on him and said he was doing very well on it today, that he was not gasping and that everything looked good. This is the first time anyone has done this in weeks. Jennifer, our hospital social worker came by to see us and gave Ben a nice pep talk. He responded very well to her. He was showing his sense of humor with Jennifer by making funny faces, smiling and rolling eyes a lot. Manjit told me that a physical therapist came in early this morning before I got there but that she did not do anything with Ben, so I did arm and leg exercises with him. He doesn't like doing them, but when I tell him how important they are for him to get well, he finally gives in. Dr. Kim was in for Dr. Hu today. He checked Ben out and said Ben would definitely not be going to All Saints today because of his belly being hard again. He ordered x-rays to be done to see if it is fluids again and if so, he will order another belly tap for later today or early tomorrow. I asked Dr. Kim if there was any other kind of medication or drug that could help "jump start" Ben's intestines. They have already tried Reglan and Neostigmine, but neither seemed to help. He told me that they are the most commonly used and that they are the strongest used. The doctor said that they are giving Ben Lasix which is a diuretic, but that he may raise the dosage to see if that helps the fluids leave Ben's body and maybe not build up in his stomach.

Sunday Update For Ben

I got to the hospital at 8:30 AM. Ben was asleep when I came into his room. His belly is still somewhat distended and felt a little softer to me today, but Manjit (Ben's nurse) told me she thought it felt harder today. Ben woke up a little after 9:00 AM and asked me what time it was. He's not talking because like Scott (R/T) told me, if they fix it so he can talk, then his trach leaks and he gets less air to breathe. But we are getting better and communicating with him "slowly" mouthing things to me so I can read his lips and with a paper I made for him with the alphabet on it so he can spell out words. They came in and repositioned him at 10:00 AM and we discovered that he had a very small bowel movement. I guess "little" is better than none. Hopefully this means his intestines are trying to do something. I know that his belly was making all kinds of noises today. After they were done with him, I made him do some physical therapy with me. I made him bend his knees and stretch his legs, then we worked with his arms. I had him bend his elbows and the reach his arms up over his head and hold them there for as long as he could. Then I had him push against my hands as hard as he could. He asked me if he could get out of bed and sit in a chair. I told him he couldn't but I asked if he wanted to have us fix the bed in the chair position, but he said no. He kept telling me I needed to go down to the first floor and get his clothes. Don't know why he thought his clothes were down there. I explained to him that all of his clothes are at home. Then he asked me where his wallet was with his driver's license and credit cards. I got it out of my purse and showed it to him and he wanted to see the driver's license and each credit card and then wanted to count the money in his wallet. He always worries about his belongings. I keep telling him that I have it all and that it is in a safe place. When Dr. Hu came in, I asked him why he asked me the question yesterday about a "time limit" on Ben getting well. He told me not to dwell on the question, that there is not any real answer for it. He said that he always asks patients and families this question just to see what their thoughts are. I again told him that giving up on Ben getting well is NOT even a consideration. I told him that Ben is NOT a quitter and that some days he is just a little more frustrated than other days but that I KNOW he WILL get well some day. Scott the respiratory therapist was in the room with the doctor and Scott told Dr. Hu that he sees no reason why Ben cannot be weaned from the ventilator eventually, so the doctor said that was an encouraging sign. The doctor said that he is still planning on moving Ben back to All Saints tomorrow and will try to get him over there as early as possible instead of late in the day like it usually happens. Ben started dozing off again around 12:30 PM, so I turned a baseball game on the TV for him and told him I was heading for home. He wanted to know what time I'd be back tomorrow. I told him it would be between 9:30 AM and 10:00 AM after the traffic cleared some.

Saturday Update For Ben

I got to the hospital very early this morning because I had received a phone call from Ben last night at 9:00 PM (the nurse helped him make the collect call) and he was very depressed and very confused. He was telling me that the hospital had promised he could go home yesterday and that they told him later he couldn't and that they were "playing games" with him. It broke my heart and I could not sleep much last night. He was very alert today, but still pretty depressed. I exercised with him and talked with him about how it's going to take him several weeks and possibly months to get strong enough and well enough to come home. He was not able to talk today, so I had to try to read his lips. Sometimes I could, sometimes I couldn't. I finally got him to once again promise me that he would get well and NEVER give up. I spoke with the doctor about Ben's depression, but he said he could not give him any antidepressants because they are all pill form and Ben cannot take anything by mouth. The doctor asked me a very strange question today. He wanted to know if Ben or I had ever set a time limit on how long it should take Ben to get well. What kind of a question is that? Especially when the doctor had just told me that he thinks Ben can get well, but that it will probably take months. I told the doctor that I have never even thought about anything like that and that I will not even consider that he won't get better. Ben's belly is still large and it did feel a little harder to me again today, even though they just did the paracentesis yesterday. I was there for 5 hours today and I am exhausted.

Ben's Update For Friday

I got a call from the hospital while I was in my Caregiver's Support Group this morning. They wanted my permission to let them do another paracentesis on him, which I approved. I got to Kaiser at noon and Dejon told me they drained another 5 liters of fluids from his belly. Ben was very tired and cranky. He usually does get tired after this procedure, but he usually just goes to sleep. Today he was arguing with me about everything. He slept for about 45 minutes and then he woke up and was still very angry. He pulled the sheet up over his head and I asked him what he was doing. He told me he was dying. I took the sheet off his face and told him to stop that. He told me that he wished he could get more air to breath. I'm afraid that his lungs are getting weaker because he was complaining about this yesterday. I spoke with the respiratory therapist yesterday and she said everything looked fine. Ben was confused today too because he kept telling me that he was not at Kaiser and that we were only 2 miles from home. He asked me how many miles I thought we were from home and I said about 20 and he told me I was crazy. Then he kept trying to tell me that they did two different procedures on him before I got there. He knew the did the paracentesis but he kept wanting me to ask the nurse what the other one was. I asked and she told me they ONLY did the paracentesis, so I don't know what he was talking about. I think he was confused because usually a nurse comes in first and prepares him by cleaning the area they will insert the needle and they give him a local to numb the area. Then the doctor comes in and runs the ultrasound on his belly to see where to go in and then they do the procedure. I'm thinking he thought the nurse did one procedure and the doctor did another. He fell back to sleep around 1:35 PM, so I left to come home. Around 3:15 PM, Dr. Hu called me. He said that he got a "5th opinion" from the Gastro guys on Ben. He asked again if there was anything else they could do for Ben to get his intestines moving and the Gastro guy told him no, that they have done everything possible. Now it's just "wait and see" if they start working on their own. He told me that he's still hoping Ben's bowels will start moving. He wants to keep him on TPN for about 1 to 2 more weeks because he said every time they try to start him on tube feeding, that's when he bloats up and starts accumulating the fluids again. He is talking about moving Ben back to All Saints on Monday. He said they can give him the TPN there and give him the therapy he needs to get stronger. I told Dr. Hu about Ben complaining about not getting enough air and Dr. Hu said it's probably because he is just so week.

Ben's Thursday Update

A better day today. Ben was more alert this morning. He told me when I first got there that he had thrown up when I asked him how he was doing. He threw up again right after I got there. They don't know if it's because of the drug they gave him or if it's that he is not tolerating his feeding. They told me they are still monitoring his feeding very closely to see if that's the problem and his nurse Evelyn gave him something to calm his stomach. He had his voice today and he was asking what time it was and some other things. He told me his bottom was sore so I told him about the sore he had. He wanted to know how big it was. The physical therapists came in around 10:15 AM and worked with him for 30 minutes. They did his leg and arm exercises and sat him up on the edge of the bed and held him there for 5 minutes. They said that is their starting goal and each day the will try to sit him up longer. They make him count with them as he is doing his exercises and he and Dave (one of the PTs) noticed that once when they were working on one of his arms Ben said "aye carumba" like Bart Simpson. After that, Ben and Dave were joking with each other about The Simpsons. When they were done working with him, he was so pooped he fell to sleep. Before they had gotten there to work with him, he had wanted to be repositioned in his bed, so when they sat him up on the edge of the bed he said "no this is a good position". They were coming in to give him either a bed bath or a shower, don't know which, but I decided I'd leave and let them do their thing.

Thursday Update For Ben

Ben was able to talk today and he was being very verbal. He is angry about everything. He said that he does not want to have a BM because they won't let him to get up to go to the bathroom (which he cannot do anyway) and he says if he does it in bed it takes them too long to come and clean him up and he hates lying it it (which I can understand). He swore at me a couple of times because he didn't like the answers I would give him about going to the bathroom or getting up. He wanted me to ask the nurse if he could sit in a chair (which he cannot do) so I got her to explain to him why he couldn't. She told him that with his distended belly, his abdominal muscles are not strong enough to hold him up. He fell asleep around noon, so I left to go do some more grocery shopping.

Kaiser Doctor Just Called

Dr. Vas called me at about 2:20 PM. He said that he finally got hold of Dr. Shantha and that he and she are finally on the same page. He intends to keep Ben at Kaiser 2 to 3 more days to watch if he improves (Dr. Hu will be overseeing this). They want to give Ben another ultrasound to make sure that most of the fluids have been drained through the NG and to see if they may need to do another paracentesis before they return him to All Saints. He said they are hoping that some of the swelling in his belly will go down and that he will have some BMs before he goes back, but that is NOT required for Dr. Shantha to take him back. He said that she understands now that there is no blockage and that they have had 2 surgeons look at the x-rays to confirm that.

Wednesday Update For Ben

Ben was awake when I came in this morning as his nurse (Joyce) was cleaning him and repositioning him. He was very alert today but seemed tired. He told me his left knee was still hurting a lot and it is still red and a little swollen. They are still giving him an antibiotic for his knee. His belly is still big but not too hard and it is still draining some through his NG Tube. He had told one of the nurses that he had been passing gas, but there is no way for us to confirm that and sometimes he is confused. It would be good if he is passing gas so that the bloating in his belly will go do, but he has not had a BM for several days and he tried to tell us that he had one recently. That's why we are not sure about the passing of gas. His belly is making a lot of sounds, so hopefully that is a good sign. They are using mineral water suppositories on him to see if that will help him have a BM. He actually looked better to me today. His color was excellent and his eyes are very clear. I did not see anyone from physical therapy again today, so I worked with him on some of his exercises, but we had a problem doing anything with his left leg because of his sore knee. I spoke with Dr. Vas and he said that Ben's test results from the x-rays they took with the dye going through Ben's intestines showed no blockage. He told me that they will keep Ben a few more days to make sure that all of the fluid in his belly has drained and they are hoping that his bowels will start moving and that some of the bloating will go down. Ben told me he wanted me to bring some of the magazines and newspapers that we have gotten in the mail and read them to him. That's the first time he has asked me to do something like that, so that's another good sign. So today was a "good" day.

Tuesday Update For Ben

Didn't stay with Ben very long today because of the weather and since my BFF Linda was going with me I felt that maybe I needed to just check in on him for about an hour or so and then she and I could go to lunch and do some other stuff so I could have a little break for myself. I still felt guilty about it though. We got to the hospital a little after 10:00 AM. Ben was alert but very tired. He fell asleep by 11:00 AM so we left. They had done some tests on him last night and it involved giving him some kind of dye to run through his intestines to see if he had any blockage. The dye made him sick to his stomach, so it tired him out. When I was there, they still had not gotten the results from tests back yet. I noticed yesterday that his left knee was very red and he told me it hurt really bad. I told the doctor, so they started giving him an antibiotic for cellulitis. The nurse surprised me by saying that they were talking about discharging him and sending him back to All Saints. I asked how could they do that when he is still so weak. I talked to Dr. Vas (Internal Medicine) and told him again that Dr. Shantha at All Saints implied that she DOES NOT want Ben back there until his belly is down and he is stronger so that he can do the physical therapy and tolerate feedings. Dr. Vas keeps telling me that he is going to call Dr. Shantha and discuss Ben going back to All Saints. He told me that basically, Kaiser is just "maintaining" Ben right now and that they cannot do anything to get his belly bloating to go away other than drain the fluids (which they did). He said that All Saints can "maintain" Ben and give him his TPN just like Kaiser can plus they can do his physical therapy better than Kaiser can. I feel like I am between a rock and a hard place. Dr. Shantha and the Kaiser doctors need to communicate with each other. I had to take some forms over to All Saints when Linda and I left the hospital and I talked with my social worker over there. She told me that they got a call Monday from a case worker about discharging Ben and sending him back and Terri (All Saints Admissions) told them that Dr. Shantha would have to ok him coming back. I told her that I didn't feel Dr. Shantha would take him back right now in his present condition but that I had told Dr. Vas to talk to Dr. Shantha. Hopefully they will work something out between themselves.

Received this email from Ben's brother

Received the following email from Ben's brother this morning. I had asked the GI doctor to call Ben's brother. Here is the email:

dr. schlussel phoned me on my cell around 8 p.m. he was very friendly and we talked for about 20 minutes. he said the liver may partially regenerate in time, and asked how long since ben had a drink, and what was his intake on average the last year or two. they may inject some dye into the intestinal tract to see if it passes through or is blocked. he emphasized that a big danger is simply the prolonged time in the hospital--the possibility of picking up bugs, infection, etc. he said ben's lungs are not in good shape--the fact that he didn't smoke doesn't mean his lungs will automatically be healthy. i stressed that the physical therapy needs to be pushed, and he said he would do what he could. he's going out of town soon for a few days, but will be called on to consult when he returns. says there are no signs ben has cancer or anything like that. seemed to indicate that he has seen people with multiple problems like ben's before; some of them made it, some of them didn't. they're trying to build ben up with more nutrition. in general, he didn't add a lot to what we already knew, but he wasn't discouraging, had more of a wait-and-see attitude.

Today's Update For Ben

Ben was very alert today and trying to talk to me when I came into his room. I took his wrist restraints off of him when I got there so he could stretch his arms. I still do not believe he pulls the tubes out on purpose, but we still have to watch him. His belly is still big, but is soft. Vicki (physical therapist) came in around 10:15 AM and worked with him for about 20 minutes. She said that maybe in a few days she will try to sit him up on the side of the bed like they do over at All Saints. I found out my social worker was not in today so I talked to another one and told them I wanted to speak with the GI doctor and to please call him and have him come see me while I was in Ben's room. Dennis (Ben's nurse) told me that they plan to do some tests and x-rays on his belly this afternoon or this evening. Dr. Schlussel (GI doctor) came in around 12:40 PM. He pretty much said the same thing all the other doctors have said. He said Ben has cirrhosis and that the last cat scan showed now blockage, but because today he heard some "high pitched" sounds in Ben's belly, there "may" be a blockage in the small intestine, so the need to try to find out if there is because no surgeon will do surgery on Ben in the condition he is in unless they really know something is in there. He said it may be what they call a pseudo-obstruction of the bowel which is a rare condition with symptoms like those caused by a bowel obstruction, or blockage. But when the intestines are examined, no blockage is found. Instead, the symptoms are due to nerve or muscle problems that affect the movement of food, fluid, and air through the intestines. In older adults, the colon becomes enlarged after surgery or illness. This condition is known as acute colonic pseudo-obstruction (ACPO), also called Ogilvie syndrome or acute colonic ileums. ACPO can lead to serious complications and can be life-threatening. This was not something I really wanted to hear and I'm praying this is NOT the case. Before I left to come home, Dennis came in to give put in a new bag of TPN for Ben and Ben asked Dennis if he promised not to pull on any tubes, would Dennis please not restrain him. Dennis told him ok, but that he would be watching him. I'm sure they will restrain him tonight though because I think he does it in his sleep without realizing it. I also told Ben that it is supposed to be raining pretty hard tomorrow and I might not be able to get down to see him. He made a "sad" face but then nodded OK. I said "you don't want me to come down if the drive is not safe do you?" and he shook his head "No".

Grieving

I think I am beginning to feel a grief similar to the grief people feel when they have lost a loved one. Even though Ben is still alive, he is very ill and in the hospital, and I feel like I have “lost” him. He is no longer the Ben that he was which makes it feel like “that Ben” no longer exists. Now and then I will see that “gleam” in his eyes that he had when he would tease me, or I see that smile come across his lips that he would have when he was pleased about something. But most of the time I see a different Ben. I see a man who is discouraged, frustrated, sad and very frightened. I see a man who wants to come home more than anything, and cannot understand why he can't. I see man who is getting weaker with each day and who seems to be slipping away from me.

I've heard about the five stages of grief a person goes through when they have lost a loved one and they seem to also fit when you have a loved one who is very ill and you don't know if they are ever going to get well.

1. Denial – When he first had his surgery I kept thinking “this isn't happening to us”. We are supposed to have many more years together enjoying our life and each other.

2. Anger – I was mad that this was happening to us. This was NOT in our plans. Why us?

3. Bargaining – I started begging God to make Ben well and promising that I'd give anything for Ben to be well and back to normal.

4. Depression – This is where I am now. I cannot stop crying. I cry all the time. When I think I have no more tears to cry, I find I have buckets of them.

5. Acceptance – I have not reached this one yet. But eventually, I'm sure I will have to.

I have never felt this kind of pain. I have never felt so alone or so discouraged in my life. I pray that I will be able to stay strong. I thank all of my online friends for their prayers.

Ben's Sunday Update

Not really a good day. Ben look very frail when I got to his room this morning and I started to cry. Scott, Ben's respiratory therapist for today noticed me crying and tried to comfort me. He kept telling me that I'm not alone, that God is always with me. I found out later that Scott went to Dr. Vas and told him I was crying and very upset. Dr. Vas came to see me and told me that he understands my frustration about Dr. Shantha telling me Kaiser has to "fix" Ben's problem and then Kaiser telling me there is nothing they can "fix", that Ben's body must heal itself and they have no idea how long that will take. He said he is going to talk to Dr. Shantha about this. He also advised me to contact Kaiser Social Services. I told him I had done that and asked for my social worker (Jennifer) to try to come see me tomorrow in Ben's room. Ben was confused a lot today. Kept telling me he was at home and that I was crazy when I told him he was in a hospital room. He kept asking me if I could drive him home and a couple of times, he said he did not know who I was. At one point, he told me he did not know how much more of this he can take. Well I know how he feels because I feel exactly the same way.

Ben's Saturday Update

Ben was still throwing up this morning. It was not from the drug the ER doctor told me about as they had not given that to him yet. They did give it to him later and he seemed to tolerate it, which means he didn't throw up after they gave it to him. The Kaiser doctor told me today that this drug was a "temporary fix". It constricts the intestine to see if it will make the patient have bowel movements. Kaiser is still telling us that there is no blockage but that Ben's still has paralysis in his intestines and that there is no "fix" for it as Dr. Shantha requested. The Kaiser doctors say Ben's problem is "functional" not "mechanical" so ONLY his body can heal itself or not.

Ben's Update - Not A Good One 05/13/2011

Not a good day. Ben was sent back to Kaiser ER because his stomach has gotten huge again and is getting hard again. Doctor at All Saints pretty much said until Kaiser can figure out what the problem is, she does not want them to send him back because they cannot help him to get well in this condition. She feels there is another blockage in his intestines. Kaiser ER doctors insist there isn't because they took x-rays tonight and looked at his last Cat Scan and said neither shows a blockage and it is way too risky to do exploratory surgery on him because they feel he might not survive it in his condition. They are going to try a drug that supposedly "kick starts" the intestines because they feel that they are still not working as they should. But the are still grasping at straws. At first Ben wanted me to spend the night at the hospital with him. He said he'd be more comfortable with me there with him, but then when he saw me trying to sleep in a chair, he told me to go home. I kept asking him over and over if he wanted me to stay and first he'd say yes, but then turn right around and say, "but go home". I didn't know what to do. Finally he said "Just go home because he'll sleep better and you have things to do there". I told him I would NOT sleep at all tonight which I know is true because it is now midnight and I'm still wide awake. But I finally gave in a left to come home and he told me to drive very carefully and told me he loved me very much. I gave him a kiss and told him I love him very much too.

Ben's Wednesday Update

Ben was pretty out of it today. My advocate from my attorney's office said it's probably because the are giving him that low dose of Haldol. He loves to take his anger out on me every day now. He is nice to the nurses and other people who come in, but once they leave, he is calling me names and telling me I don't care about him. I know he does this because he feels "safe" yelling at me because he knows he can do it and I'll still love him. He kept telling me that today was November 2nd and that we just had Halloween. His belly is starting to get a little bigger again and today it felt like it was getting hard again. The facility dietitian said that it is probably because they have started feeding him through the NG tube again. She said she is monitoring it. He threw up while I was outside having lunch on the patio. This could mean that he is not tolerating the feeding. The physical therapists worked with him again today. They are trying to get him strong enough to be able to put him in a special chair so he can start going to the activities room to be with other people. I asked to have the facility chaplain start coming in and visiting him because of his crying spell yesterday. They gave him another one of those showers he enjoys so much.  I attended a Care Plan meeting with my social worker, my advocate from my attorney's office, the activities director, today's charge nurse, the dietitian and the physical/occupational/speech therapy rep this afternoon. Went pretty well.

Tuesday Update For Ben

The R/T fixed Ben's air in his trach so he could talk to me today. He wanted me to ask the doctor when he could go home. I told him he could not go home for several weeks because he needs to get strong and well and get off of the vent. The doctor came in to check on him and she wanted me to come out into the hall to talk with her about the Haldol she still wants to give him. When I came back into his room, Ben said "are we going home now?" and again I had to tell him no and why. He started to cry. It ripped my heart out. I don't think I've ever felt so down in my entire life. I didn't know what to do for him. He just kept sobbing. I finally calmed him down some and he told me that he's about ready to give up on ever getting well. This just killed me. The physical therapists came in to work with him, but his blood pressure would not stay stable, so they could only work with him for a little while. After they left, he started to fall asleep, so I came home.

Monday Update For Ben

Ben was doing well today. They put the hand mittens back on him because they say he is still trying to pull out his NG Tube. His doctor called me earlier before I went over to see him saying that she felt he was a little confused, so she was going to give him Haldol which is supposed to help patients not be so confused. She said it will not make him drowsy and will not keep him from doing his physical therapy. She said she is giving him a very low dosage. She also said that she is going to continue giving him TPN at this time, plus the IV lipids/proteins. He still has no voice. He was watching Rory's TV when we came in and the nurses were just finishing cleaning him up and repositioning him in his bed. His belly is still distended, but neither Linda nor I thought it looked like it was any bigger than it has been. To us it appears that the size of it is staying about the same now and it remains soft, so Dr. Shantha said she does not think there are any excess fluids in there, just gas. Linda was telling Ben that she has been hired part time to be a Sam's Club greeter. Today was a pretty good day.

Short Sunday Update For Ben

I only spent 2 hours with Ben today. At the hospital I would stay for 5 hours on Sundays because he was in a private room, but at All Saints, there are 3 people in each room and the place is very busy and very noisy, so I don't stay long now days. Ben was a little more calm today. They had reinserted his NG Tube. The charge nurse spoke with me about him pulling it out and I told her that I really do not think he does it on purpose because he is the kind of person who would admit it if he was doing it on purpose. I talked with him about not even thinking about "What are we going to do if I don't get well?" because this is NOT an option. I told him that once he gets working with the physical therapists that he will up on his feet in no time. He nodded in agreement, so I hope he is finally "getting it".

Generic Saturday Update For Ben

Ben pulled his NG Tube out again. He is getting discouraged now about getting well. He still does not have his voice. He mouthed "what are we going to do if I don't get well?" I told him to NEVER think that way. I try not to cry when I'm with him, but when he asked this, I could not hold back the tears. He just stared at me.

Generic Friday Update For Ben

Had my Caregivers Support Group today so didn't get over to see Ben until afternoon. Was with him for about an hour. He was able to communicate some, but still having trouble talking. Today I realized how scared he really is. I told him that one day he will be well and come home. He said "I don't know". When I said "what do you mean by that?" he said "We don't know what is really going to happen". He told me that he did not mean to pull out the NG Tube last night. I believe him because I notice that when he scratches an itch on his nose or cheek that sometimes his hand comes very close to the tube so I think he accidentally pulled out last night. His nurse today told me that he is a very good patient, so I think he is trying as hard a possible to cooperate with them.

Generic Thursday Update For Ben

Ben was very agitated today. I don't think he likes being at All Saints. He seems more agitated there than he does at the hospital. I keep telling him that this is where he needs to be before he can ever come home. He still does not have his voice and he gets so mad when I cannot understand him. It really frustrates me too. Don't know how much I can take of him doing nothing but telling the nurses that he wants out of that place and being mad at them and me all the time.

Generic Wednesday Update For Ben

Ben almost wasn't going to be transferred by to All Saints today because his blood levels had gone down and the doctor was worried about it, but since Ben was not bleeding from anywhere, the doctor ran another blood test. He said it was possible they got a "false reading". The new blood test showed all was OK, so the doctor said he would release Ben back to All Saints sometime this afternoon or early this evening. Ben told me to come home because the traffic gets to bad, so they had not transferred him by the time I left. I'll call All Saints in the morning to make sure he got there before I head over that way.

Generic Tuesday Update For Ben

They decided to do one more paracentesis on Ben later today. I had to leave before they did it as I had to sign some papers over at All Saints. So the doctor said Ben will not be moving back to All Saints now until tomorrow. A physical therapist did come and work a little with him today, but she only did what I can do with him. All Saints works with him so much more.

Generic Monday Update For Ben

They did stomach x-rays on Ben today and are going to do a Cat Scan on his stomach sometime this afternoon. Dr. said if all is ok, Ben should be going back to All Saints tomorrow.

Generic Sunday Update For Ben

Ben was asking the nurse where I was this morning. She told him I'd be there soon and he asked "what time"? Nice to know he wants me to come and visit him. He took a 2 1/2 hour nap today and when he woke up, he was very alert. Asking me all kinds of questions and telling me he was "trying to get his bearings". He was remembering several things too, so this was a good day.