Generic Saturday Update For Ben

Not a good day. Ben was re-admitted to Kaiser this morning. They noticed when he was in the ER waiting to have a Picc Line inserted that he is having some rectal bleeding and it is burgundy in color, which means it is coming from deep inside. They are running labs on his still. Dr. said normally they would do another colonoscopy to see what was causing the bleeding, but because Ben cannot take anything orally, they can not prep him for one. If it does not stop bleeding, they may have to do one anyway, but when the colon is not clean, it's hard from them to see anything up there. If the bleeding stops, or if they find what is causing it, they will consider sending him back to All Saints on Monday.

Generic Friday Update For Ben

Ben was talking up a storm today when Linda and I went to visit him. They did "pet therapy" today and they brought a chocolate brown lab in to visit Ben. The dog's name was Winston. Ben told us the nurses had given him a shower and how good it felt. He love it. I was also told by his physical therapist that he did very well again today. Ben was being transported back to Kaiser this afternoon to have a Picc Line put into his arm. He had pulled his last one out before he left Kaiser last week and Dr. Shantha at All Saints was a little mad about them not replacing it with a new one before they sent Ben to her facility. I have to find out tomorrow morning if he is back at All Saints yet or if he is still over at Kaiser ER. All Saints does not have the ultrasound equipment to insert a Picc Line so they have to send him to Kaiser so a specialist can do it. His kidneys might be failing again too, so don't know if Kaiser was going to keep him for observation or not. I hope the do not keep him long because I'm afraid he might back-slide. He kept telling me he was going to "sneak out tonight" and he really go mad at me because I would not bring him home with me. Today was somewhat of a "crazy" day with him.

Generic Thursday Update For Ben

Only spent 1 1/2 hours with Ben today. He was awake when I came in and he was talking but it was very raspy. He was understanding some of the things we talked about, but he was confused too. He was telling me stories about things that happened to him that I know were NOT true, like he drive himself to the All Saints this morning and that he was at WalMart last night. Don't know if this a result from the Morphine they had him on weeks back when he was at Kaiser or just normal confusion from being sick for so long.

Generic Wednesday Update For Ben

Today was a really good day. Ben was awake and alert when I got to his room and he could talk! He was asking me all kinds of questions. His physical therapists came in and worked with him for 30 minutes. He did great! They also had him sitting up on the edge of his bed with his feet over the side. They actually let go of holding him up and he sat up for at least 2 or 3 minutes on his own with no help. The head doctor of the facility came in twice while I was there and she was telling me everything she was going to do for him and what her thoughts were etc. She is very dedicated and forthcoming. I like her. There are constantly nurses and therapists buzzing around him when I'm there, unlike Kaiser where I only saw a nurse every 2 or 3 hours. I've sent out a complete detailed update to those of you who asked to be added to my Ben Update Email Listing.

"Generic" Tuesday Update For Ben

Today was Ben's first day at the Sub-Acute Care Unit. It went pretty well. Physical therapists came in and worked with him for about 20 to 30 minutes and said he did excellent. They had him doing a lot of the stuff on his own and he actually did more than I thought he could. They said if he keeps up this well, they will have him sitting up in the bed in no time. They cannot start weaning him from the vent yet because the doctor who has to evaluate him and give them their orders for that was out sick today.

"Generic" Monday Update For Ben

Got home late tonight. Ben was moved from hospital to All Saints Healthcare Sub-acute facility. Had to wait until ambulance came for him and then followed them over to the facility and met him there. Spent about 30 minutes with him there this evening. This morning he was awake and very alert. He "talked" a little today and joked and made faces. Doctor felt he was stable enough to move and said hospital could not do much more for him so he needed the expertise for the sub-acute unit. Please pray that they will get him off of the vent soon and give him a lot of physical therapy so he can come home soon.

"Generic" Easter Sunday Update For Ben

The did another paracentesis on Ben this morning. He was pretty much alert until afte rthey did that and then he was mostly asleep the rest of the time I was there. He was only able to do his breathing trials for 20 minutes today before he had trouble breathing and he broke out into a really bad sweat.

"Generic" Saturday Update For Ben

I was with Ben today from 8:30 AM until 3:30 PM. He was doing pretty good. Awake when I came into his room. He did his exercises with me and seems to be getting into doing them more. He did not have a fever today which was good. Thanks to all of your for your prayers. Happy Easter.

Basic Friday Update For Ben

Ben was awake when I came into his room this afternoon. I was later today because I went to my Care Givers Support Group at the senior senter. His legs, arms and hands were not swollen, but his stomach still looks a little bloated. He didn't have a fever and he wasn't sweaty today. I only stayed about an hour as he fell asleep.

Ben's Updates

Since I have now hired an attorney to help me with Ben's health issues such as Medi-Cal and other legal matters, I do not want to post some information here on my blog that might cause problems.

If you would like to receive updates about Ben, please post a comment to me giving me your regular email address and I will send you the updates.

Kay

Wednesday Update For Ben

A few good days and then a "not so good" day. Ben did seem a little tired when I walked into his room this morning. He was on his breathing trial. They had started him on it at 8:00 AM this morning. His vitals were good except I did notice he was breathing a little harder than he was yesterday when he was breathing on his own. They came in and took some chest x-rays of him right after I got there. Dr. Mason came in and said Ben had spiked a fever again last night of 102°. She is still saying he "may" be transferred to the sub-acute unit soon. She was telling me that the doctor there is also very aggressive and very dedicated to getting the patients weaned off of the ventilators and trachs and getting rehab therapy for them. Guess she tries to get them ready to go home as quickly as possible. At 9:00 AM Dr. Mason requested that the respiratory therapist come in and put Ben back on the ventilator because he was breathing too hard. He was able to breathe on his own for only an hour today. They started tube-feeding him again. He is being given Peptamen this time. Dr. Mason says it is easier on the digestive tract. She also ordered another transfusion for him because his blood levels are low again. Ben was shaking and complaining about being cold this morning. Dr. Mason seems to think that Ben would improve more at the sub-acute unit than he is at the hospital. She says it's because the unit works harder with the patients and that they can do "miracles". The nurses came in at 10:00 AM and put Ben's bed into the chair position again even though he was very tired today and slept almost the entire time I was there today. We checked his temperature since he was shaking and he was running a temperature of about 100.8°. The nurse gave him some Tylenol to try to lower the fever. I thought Ben's belly looked a little bloated again today but Dr. Mason said it still felt soft to her so she was not going to order another Parecentesis yet. Elena, Ben's nurse told me that she felt they left Ben breathing on his own way too long yesterday. She felt that this may have been the reason he had the fever spike last night and still had a fever today. Dr. Mason even said that could be a possibility. Elena said that usually 8 hours is the longest they will keep a trached person breathing on their own, so she was very shocked that they let him go the 12 1/2 hours yesterday. A case worker came in around 11:00 AM and told me that they are almost certain that All Saints will be the sub-acute unit Ben will be sent to when he is transferred, but she did say that she didn't think it would be this week. Ben's friend Ed showed up for a visit around 11:20 AM. Ben realized he was there and tried to say something to Ed, but Ben was just so overly tired that he fell right back to sleep. So far, both times Ed has come by the hospital, Ben has been asleep. Ed and I both left around 12:30 PM since Ben was so out of it. Tomorrow I have an appointment at 11:30 AM with an attorney that specializes in helping older people with Medi-Cal, etc. so I won't be able to get over to the hospital until mid-afternoon. I left a note for the nurses to let Ben know I'd be late tomorrow AND Friday. Friday I have to go to my second care giver support group at the senior center. That's from 9:30 AM to 11:30 AM.

Tuesday Update For Ben

I got to Ben's room about 1 hour earlier today than I normally do, reason being my friend Judy Arbogast was coming by to have lunch with me in the hospital cafeteria so I wanted to spend a little more time with Ben in the morning. Ben was wide awake when I came in. He immediately tried to talk to me by making the throat sounds. Now that he knows he can do that, there is no stopping him. He was "talking" up a storm all day and I could understand quite a bit of what he was saying. He did get mad now and then when I had trouble making out his words. His vitals were good except for a low-grade fever hovering around 100-101°. They started him on the breathing trials this morning at 7:30 AM and by the time I left at 1:30 PM, he was still on it, so that was already 5 hours. I could tell that he is getting stronger because he kept trying to pull himself up in the bed and kept saying he wanted to get out of bed. Have to watch him because if he does try, he will fall and hurt himself. This is a good sign though because it means he's getting better. His hands, arms, legs and belly were not as puffy today. In fact his belly looked even smaller today than it did yesterday so it appears that his body is starting to do what it is supposed to do with the fluids and wastes. He tried to write again today. He wrote the word "my" but the rest of it I could not make out, but now that he can "croak" out words, he didn't really need to write. Around 9:15 AM, they came in to reposition him and he dozed off for a little while after that. At 10:15 AM, Dr. Mason came in. She said if Ben continues to improve like he has in the past 2 or 3 days, they will start discussing discharging him and transferring him to the Sub-Acute Trach Care Unit, which is a good thing because that means he is getting well and they unit will work with him more than the hospital will, but now I have to start worrying about trying to get him Medi-Cal in case it takes more than the 60 days Kaiser covers at such a unit for him to be able to come home. I have called a lawyer here in the Santa Clarita area who specializes in this kind of case and I have an appointment to see her on Thursday morning. At 10:25 AM, they put Ben's bed into a "sitting up chair position". Once they did that, he really became very "verbal" with his throat sounds. He even told the nurse "I'm Pissed". That's my Ben!

Monday Update For Ben

Those of you who know me well know that I am not an "overly" religious person, however, today the Lord showed me a miracle which I will tell you about later in this update, and I hope that all of you will praise and thank the Lord for this miracle. First I will tell you about the morning. I arrived in Ben's room around 9:40 AM. He was sound asleep and I could hardly even get him to open his eyes. I like it much more when I find him awake when I walk in. His vitals looked good except for a slight fever of around 99.8°. My social worker came in and introduced me to the social worker who will be taking over Ben's case next month. Nat, my current social worker is an Intern and will be completing her Internship at Kaiser and moving on, so now Jennifer will be my social worker. While Ben's nurse Letty was in the room this morning, Ben seemed to be "choking" a lot and Letty told me that he was having a lot of trouble with spittle in his mouth and throat today. Ken the respiratory therapist came in and said that Ben had once again failed the breathing trial this morning. Letty told me that Dr. Mason had ordered a cardiac chair for Ben, which I knew about yesterday, but Letty felt he was too weak for one right now. Ben's stomach was still soft from the parecentesis yesterday, but it was already starting to bloat back up some. However his arms and hands were not swollen at all today. Dr. Mason came in and I asked her how are we going to make Ben's future doctors be more aggressive like her when she is no longer his doctor and she said that this could be a problem. She said she is trying to work with some of the ICU doctors, especially one who is aggressive like her to see if they will help us with this possible problem. She had also called the physical therapy department and said she was upset because they told her that Ben is not strong enough to work with them, so they don't come to his room. Dr. Mason told me that she does not agree with their policy, but that there is not a whole lot she can do when it's the financial side of Kaiser that makes this policy as the physical therapists are contracted. She told the nurse that she wanted Ben in the cardiac chair (if it arrived) this afternoon if he was more awake. Awhile later, Dr. Han from the Pulmonary department came in from ICU. She also told me that they are still running cultures on Ben and that she is having an Infectious Diseases doctor and a Hematologist to come in to see Ben to make certain there is nothing else going on. I sure wish she could be his doctor all of the time. Ben's nurse Letty was there when Dr. Han came in. He told her that he wants Ben either in a cardiac chair or for her to set his air bed in the chair position so Ben can sit up because he said Ben needs to move around more and it's time to get aggressive. I think he's one of the doctors that Dr. Mason is trying to work with on this. Letty and her nurse's aide tried to set the bed into its "chair position" but it wasn't working right plus Ben started screaming and making faces when they were raising the head of the bed, like they were hurting him when they were trying to do it. They finally gave up and said they are going to put in a call for someone to come in and try to make the bed work. Ben looked very relieved. NOW for the miracle. After the nurses left the room, I was telling Ben how sorry I was that they were hurting him and that I wished there was some way he could tell me what was hurting when they were moving the bed. His lips were trying to talk to me but I could not understand. I sat in my chair next to his bed holding his hand. He then tapped me on my arm and when I looked at him, he was moving his hands and arms at me like he was wanting me to come closer to him, which I did. I looked at him and he was able to make throat noises and I heard him say "come closer", which I did. When I was close enough to him, he brought his hands up to my face. He moved them down to my neck and throat and he then started pushing his knuckles into my throat as hard as he could. I then asked him if he was trying to tell me that they were choking his throat and trach when they were moving the head of the bed and he "croaked" out the word YES! It was amazing! He actually figured out a way to tell me what the problem was. I told him "thank you for figuring out a way to let me know" and he nodded and made some silly faces at me. I told the nurses and they were also amazed. Letty came in and apologized to him for choking him. She said it was good to know that he could communicate that way and that they will try the bed or the cardiac chair again later because now we think he understands that it will be good for him. At first we thought he was just afraid that he was going to fall out of the bed or something. This morning Ben was sleeping so much that I was going to leave early today, but then after the episode with the bed, he was wide awake so I stayed later than I had expected. I think he has discovered how to make throat noises now and he was trying to talk to me all the rest of the time I was there. I convinced him to do some muscle/joint exercises with me and he was being very helpful in doing them. He did a lot of the movements himself without me helping him. I'm hoping that he has gotten an idea now that all of this is going to help him get stronger and get well sooner. When it was time for me to come home, I told him I was leaving and he "croaked" out "OK" and smiled at me. I told him "I love you" and he "croaked" out "I love you too". As I said at the beginning of this update, I am not an "overly" religious person but I was thanking God all the way home for this "miracle".

Sunday Update For Ben

Ben was wide awake and watching TV when I walked into his room this morning around 8:45 AM. They had the back of his bed up a little higher so he was sitting up a little more and he looked very comfortable. Usually he's all scrunched down and does not look comfortable. His vitals were good except that his breathing was a little higher than usual. They were going to try the breathing trials on him this morning, but he failed because he was gasping. This is NOT a good thing because they need to do the breathing trials to get his lungs stronger so they can wean him off of the ventilator. Ben asked me for some water. He cannot have anything "by mouth", so I got a swab and used it on the inside of his mouth and then put some ointment on his lips to moisten them up some. His arms and hands were a little more swollen than they were yesterday, but that's what happens when they give him nothing but fluids. His nurse Antonette told me that he had spiked a 103° last night, but they had given him Tylenol and it was down to 97.6° around 9:30 AM. They were giving him frozen plasma again to prepare him for today's parencentesis. They have to have his INR levels just right so there won't be any bleeding. They respiratory therapist came in again around 10:00 AM and tried to put him on the breathing trials again, but after 6 minutes, she put him back on the vent. She said that he has trouble breathing because of his distended belly and that she would come back after they did the parencentesis because after they get the fluids out of his belly, he should be breathing better and should be able to do it. Ben began to doze off around 11:00 AM and at 11:30 AM, the GI doctor (Dr. Schlussel) came in and did the procedure. Today he took out 6 liters of fluid. Last Thursday they only took 3 liters. I stayed in the room when they did it this time and it looked like bottles of beer and even had foam. Dr. Schlussel said the problem with this procedure is that it removes all the good proteins in his body along with the fluids. Lanny came by just as they were finishing up the procedure and Ben was sound asleep by then. Lanny stayed to talk with Dr. Mason. She is Ben's doctor until Wednesday and I sure wish she was going to be with him longer because she is the very first doctor at Kaiser to be "aggressive" in the 5 weeks he's been there. She wants to try to do a parencentesis procedure at least every other day to try to keep the fluids out. She feels that this way, they can work with him more on the lung exercises and eventually wean him off of the ventilator. She wants to try to get him moving more by sitting him up in a "cardiac chair" and she said she is going to try to get the physical therapists to come in more often. She said she is going to try to work with one of the ICU doctors who is also a more "aggressive" doctor. I hope this works to get Ben stronger. I still think it is so stupid the way Kaiser changes the doctors who are on the case every 7 to 8 days. It sucks! I asked if the hospital had someone who came in a cut patients hair, but they told me no. I thought maybe a volunteer came in or something. I'm going to check with my social worker if she knows someone we could get because Ben's hair is getting really long. Lanny and I both left around 2:00 PM and Ben was still sound asleep. Dr. Mason said the procedure tired him out.

Saturday Update For Ben

Today I didn't get over to the hospital until around 12:30 PM because I had to wait for our gardener to get here so I could let him into the backyard to mow the lawn. He cannot get back there if we are not home. Ben was awake when I got there and his nurse Antonette was with him. His vitals were good, he was very alert and Antonette said he only had a very low grade fever of about 99°. She told me that they had tried to do his breathing trial this morning, but he just could not tolerate it. Ben was really trying to talk to me today. His mouth was just "flapping" like crazy and I kept telling him that he could not talk and that I could not read his lips but he just kept trying. I asked him if he wanted to try to write what he was trying to say and he nodded yes, but when I gave him a pen and paper, all he could do was scribble and then he kept dropping the pen. He was getting so frustrated. Since he was so alert, I decided to go over everything for him again from his colonoscopy appointment all the way up to today of what had happened and why he was still in the hospital. He seemed to understand everything because he was looking right into my eyes and kept nodding when I'd ask him if he understood or remembered. I cried a little while I was telling him and he squeezed my hand. I asked him to promise me that he will not give up on getting well and he nodded ok. We said a prayer together and when I asked him if he's been praying when I'm not there, he nodded yes. I turned on a baseball game for him on the television and he was watching that, but then he kept trying to pull the sheet off of his body and he kept acting like he was trying to get out of the bed, which he can't since he is so weak plus with the ventilator and all. He started trying to really tell me something again. I kept telling him to say it slowly to see if I could read his lips. He then started trying to make as much noise as he could with his throat and I finally realized he was saying "I have to go to the bathroom". He has a catheter and also has a tube in his rectum, so he just has to go while lying in bed, but I guess he forgot that. This same thing had happened once over at Henry Mayo Hospital the second week he was there. He kept telling me he had to go. Anyway once I realized what he said, I asked him "Are you saying you have to go to the bathroom?" and he actually "yelled" the word "YES!" It was very raspy, but I understood. I got him to calm him down and explained to him about the tubes that were inside of him so he could go to the bathroom and I told him to just go ahead and do it because it was ok and he would not mess himself. He finally settled down after that. His doctor this week is Dr. Mason. She is from Internal Medicine. She came in this afternoon and she was very nice and very caring. She said she was going to request another paracentesis to be done on Ben tomorrow, so they brought me the paperwork today to ok that procedure. She said they are hoping that he can get a little stronger and start moving around more so that the bloating will heal itself. They all keep saying that more movement is probably the "only" thing that is going to get his intestines working properly to prevent the bloating. She was also going to check on getting the physical therapists in there again. When I told her he kept trying to talk, she asked me if I had a IPad and I told her I didn't because she said maybe he could use the keyboard on one of those to try to communicate with me. She went and got me more paper and a pen to see if he could try to write again, but he could not do it. I even wrote all of the letters on a piece of paper and told him to point at them to spell words out, but he just kept staring at it and couldn't do it. She, like all of the other doctors told me that he does seem to be getting better and they are very optimistic about his recovery but that all he can do is take "baby steps". I spoke with her about some of the doctors wanting to move him to an outside Sub-acute facility and she said he is just not stable enough now to be moved anywhere and that she doesn't think he will be for awhile. I trimmed his finger nails and toe nails today and he is really needing a haircut, but I don't know what I'm going to do about that. Ben was showing his sense of humor again today by "dancing" while lying in bed. He shakes his arms around, moves he legs, shakes his head a little and makes silly faces. He was trying to cheer me up by doing that most of the afternoon. The respiratory therapist came in around 2:30 PM and checked his ventilator and trach and told me again that he wasn't able to do the breathing trial today, but that they will try it again in the morning. We had some quality time together today because he was so alert. I just wish he could breathe on his own and talk to me. He was watching the baseball game I turned on for him when I got ready to leave and I noticed he looked like he was getting a little sleepy.

Friday Update For Ben

This morning I called Ben's nurse Catheryn around 8:30 AM. Since I am going to my first "care givers support group" at our senior center in Santa Clarita, I could not get over to see him until this afternoon. She said he was ok except for he has a fever of about 101°. Other than that, she said his numbers were good. She had not seen a respiratory therapist yet, but she was going to call them about doing his breathing trials. I got to the hospital around 1:30 PM this afternoon. Bens vitals were still good and his color was good, plus he had no fever. I was very disappointed when I noticed that his stomach was once again distended. Dr. Yang from Internal Medicine came in while I was there. She asked me if his stomach looked bigger to me than it did yesterday after they did the Paracentesis. I told her that yes it was plus it was feeling harder again and I asked her why his stomach keeps bloating up like that and becomes distended. She explained to me that it was because his "Albumin" levels get low. Albumin is any protein that is water soluble. She said that they are commonly found in blood plasma. When someone is being fed so much through tubes and IVs the fluid starts to come out of the blood vessels and distributes itself in the body like in his stomach. This fluid causes his stomach to distend. So at least someone has now explained to me why his stomach keeps bloating. Dr. Yang said it is NOT a dangerous occurrence, but that it does cause discomfort for the patient and can press on his lungs which makes his breathing harder for him. She told me that they will probably have to do another Paracentesis on him go remove more fluids, but they do not like to do it all at once because it causes the blood pressure to drop if they do. She said their goal is to get Ben off of the TPN and back on the tube feedings full time and hopefully his Albumin levels will stay up. Although, I know when he was in ICU, they had him on the tube feedings for awhile and his stomach was still bloated. Ben was asleep when I walked in. He did open his eyes when I said hi to him. I was there for a little over an hour this afternoon and he was asleep most of the time so I don't even know if he realized I was there. I asked his nurse Catheryn if they had tried to do any ventilator weaning this morning. She said they tried but he only lasted about 40 minutes. She explained to me that they were wanting to have him go a little longer because they wanted to do what is called "trach piece" therapy or "T-Piece". They remove the ventilator hose and put an aerosol mask over the plastic trach tube that comes out of Ben's throat and it makes him breath more on his own. I guess they tried this with him last night for a couple of hours. Ben has to be able to do the regular breathing trial for at least 2 hours before they can do the T-Piece Therapy, but today when the Respiratory Therapist Bert came in this morning to try it, and again this afternoon, Ben could not do the regular breathing trials long enough. He did another 15 minutes this morning and that was it before he started gasping and they had to put him back on the ventilator. So all he could tolerate today was 55 minutes. I found out today that they refer to the breathing trials as Pressure Support Ventilation. Pressure support is a method of assisting spontaneous breathing in a ventilated patient. It can be used as a partial or full support mode (1-3). The patient controls all parts of the breath except the pressure limit. The patient triggers the ventilator – the ventilator delivers a flow up to a preset pressure limit (for example 10cmH2O) depending on the desired minute volume, the patient continues the breath for as long as they wish, and flow cycles off when a certain percentage of peak inspiratory flow (usually 25%) has been reached. Tidal volumes may vary, just as they do in normal breathing. After they put him back on the ventilator, the repositioned him in his bed and he fell asleep, so I decided to come home. I was with him for a little over an hour today.

Thursday Update For Ben

Ben's face looked a little red when Marla and I walked into his room today and he looked like he was not feeling that well. His vitals were good and they did 1 1/2 hours of breathing trials with him this morning before he could not do it any longer. He opened his eyes and I asked him if he felt ok and he shook his head no, so I asked for the nurse to come in. He felt a little warm to me, but they checked his temperature and it was 99° at that time. Later when they took it it was 98.6° so that was perfect. Later I asked him if he was feeling ok and this time he nodded yes. They came in to reposition him and give him his medications and they were telling me what a good patient he is. I asked him if I should believe them and he shook his head no and made a funny face. Dr. Shapiro from infectious diseases came in and said he thought Ben may have a urinary infection from the catheter which later Dr. Shin did confirm and they are now giving him antibiotics for that and this is the reason they now think he was getting the low-grade fevers as everything else came back negative. Marla and I went to have our lunch and the nurse came to get me as a Dr. Mehlman from GI had come into Ben's room and they needed me to come back to sign a consent form to give him that paracentesis that they had wanted to give him weeks ago and could not at that time. They did that today and took 3 liter of fluid out of his stomach and said there is still more there, but did not want to make his blood pressure drop from the procedure and said they may do it again at a later time to remove more fluids. It was successful and his stomach did look less distended after they did the procedure and it is so much softer now than it was. Dr. Shin came in later and spoke with me. The CAT Scan they did last night showed Ben had a lot of water in his stomach which is called Ascitis and there is NO BLOCKAGE, NO OBSTRUCTION AND NO ABCESS which all very good. They do not feel that any surgery will be required. They may switch back to tube feeding tomorrow per Dr. Shin. Dr. Shin is calling in a lung doctor to have him check Ben out and see if they can start being more aggressive with the lung exercises and trying to wean him off of the ventilator so when he goes to the trach care unit that would be one less thing they would have to do. He said they may even be able to remove the trach at the hospital IF they could get him weaned off of the ventilator, but I kind of doubt he will be at the hospital that long. They are now going to get more aggressive with trying to get his infection cleared up and get more nourishment into him to make him stronger so he can go to the Sub-Acute unit. Marla and I visited the other Sub-Acute unit today and even though it is farther from our home, I would prefer he go to it because they specialize ONLY in Sub-Acute procedures and getting the patient off of vents and trachs along with rehab therapy to get them ready to go home. The unit has a very overall rating for their services. Please continue your prayers for Ben.

Wednesday Update For Ben

Ben was awake and watching television when we walked into his room this morning. They had started him on his breathing trial at 8:00 AM. His vitals was good, no fever and alert at that time. His nurse Neelima who has been with him for 3 days in a row which is very odd said that she did some exercises with him this morning as it appears the physical therapists are not coming now. Marla and I did some exercises with him again a little later after I had rubbed lotion on his feet and hands. Ben was making silly faces during the morning. He could not make any verbal noises today like he did a couple of times yesterday. We were watching Rachael Ray and she had some burgers on her show. I asked Ben if he was hungry and he nodded yes, so that is a good sign. He has not had solid food for over 6 weeks. Ben's long time buddy Ed Byrne came by to see him today. Problem was, when I spoke with Ed on the phone around 10:00 AM telling him Ben was awake enough for him to come, Ed didn't get there for over an hour later and by that time, Ben was started to fall asleep from being on the breathing trial. I think Ben realized he was there because he looked at him a few times and could hear his voice, but by the time we came back from lunch around 12:30, Ben was totally asleep. They only had him on the breathing trial for 4 hours. The respiratory therapist today said she doesn't like leaving him on it so long that he gets totally drained which is what happens sometimes if they go over 5 or 6 hours. Each therapist has their own ideas on how long he should be on it. I spoke with the floor doctor, Dr. Shin, just before we left to come home. He said that he is about ready to suggest Ben go to the Sub-Acute Trach Care Unit because there is not much more the hospital can do for him. He needs specialized care to wean him off of the ventilator, get the trach out and do physical/occupational/speech therapy which is what these units are all about. Only thing is I worry about the financial part of this care because Kaiser ONLY pays for 60 days of it. If Ben has to be there longer than 60 day, I have to start paying 100% of the bill and they are NOT cheap. I've been told to get government help I would have to take his name off of everything…our bank accounts, investments accounts, our home (which we do not own the land that our home sits on, we have a land lease), our vehicles, etc. I do NOT like that idea, but would do it if it got down to where it was absolutely necessary, but there are still no guarantees even if I do that that he would qualify for that government help. We need prayers that if he goes to one of these units that he will recover in the 2 months that Kaiser covers or in just 1 or 2 months past that that I might be able to afford.

Tuesday Update For Ben

Pray does work! Last night Marla and I had a crying party and prayed our souls out together. I told God that I was handing Ben over to him and I asked him to start to heal Ben and show us some sign of a miracle today. My friend Linda came by and picked Marla and me up this morning and drove us down to the hospital. Ben was asleep when we first came in but he opened his eyes and tried to talk and we could actually make out a few raspy words even with the trach in his neck. I told him I loved him and he "croaked" I love you too. I said thank you and he "croaked" you're welcome. He had a slight fever of 100.3° and was very sweaty. They tried the breathing trial on him today, but he failed, but other than that, his vitals were really good, the swelling in his arms and hands was just about gone. He legs were still a little swollen but not as much as before. His belly is still big, but it actually did look a little smaller today. He was also too tired for the physical therapist when they came in, but once we all came into his room and started talking to him and helping him do his exercising, he was wide awake and more alert that we've seen him in several days. He was looking all around his room at all of the machines and looking at all of us. He was not able to help a lot with his exercising, but he did help a little. The nurse said his cultures for C.Diff have been coming back negative, so that's good. When I was exercising his joints and muscles, my friend Marla put lotion on his feet, legs, hands and arms. They are now giving Ben lipids through his IV for nutrition. Ben gave us several big smiles today and made goo goo eyes at us several times. They got his fever down in the afternoon with Tylenol. His brother Lanny came by and he and I spoke with the doctor who is on Ben's case right now. Lanny was reminding Ben about his colonoscopy and his visits to the ER and then his surgery and Ben was nodding all the time like he understood. Then Lanny said some name that was from their childhood and Ben gave him a great big smile and nodded so he is remember way back now. I took another photo of him which I will post her. He gave me a smile when I took it. I also took a short video of him with my phone but when I transferred it to my computer, there was no sound. I'm going to try to take one tomorrow with my regular camcorder if he's as alert as he was today. We were going to drive by that other Trach Care Unit this afternoon, but decided to just come home and Linda, Marla and I went for a nice walk around the lake over in Bridgeport. I hope this progress with Ben continues now. Please continue your prayers for him.

Monday Update For Ben

Ben was awake and watching TV when we came into his room. He was much more alert this morning than yesterday. They had started him on the breathing trial at 8:00 AM. I asked for the nurse to call the physical therapist. I guess they came in at 7:00 AM and Ben was asleep so they did not work with him. Also asked to have the doctor come in to give me more information about Ben's condition and recovery. They are going to run tests again for C.diff. I spoke with Dr. Shin on the phone who is the floor doctor right now. Kaiser has a team of floor doctors and they alternate every 7 to 8 days. There is no primary doctor who oversees Ben's case or the reports that the floor doctors turn in, but any member of the team can see the reports online. Dr. Shin said they are doing everything possible to keep Ben's vitals, fluids, body functions, etc. stable. He said he had spoken to the surgeon who has been on Ben's case since the first day he was bright to Kaiser about Ben's distended belly. The surgeon says there may be a blockage still, but Ben is too weak to be a candidate for surgery at this time. If he improves, they will consider exploratory surgery and even if he doesn't, they may have to opt to do exploratory surgery if they cannot get him stronger but it would be risky. I was told that I could ask for a second opinion from another doctor but that it would have to be a Kaiser doctor and since at least 4 or 5 Kaiser doctors have worked with him so far, I've actually had that many "second opinion". As for his physical therapy…because Kaiser Insurance pays the therapists per visit, if they come in to work with Ben and he is not awake enough or too weak to work with them, they leave and report that to Kaiser Insurance. If this continues, Kaiser Insurance tells the therapists to stop coming to work with him unless his doctor at the time determines he is strong enough to cooperate with them during the therapy and then the doctor would put in an order for them to start coming again. So this is why he is not getting the physical therapy he needs. The kidney doctor came in today and said that Ben's kidneys were better today and seem to be improving each day. She is still trying to lower his sodium levels but she said things do seem to be improving very slowly. They have now suggested that we wear surgical masks when we are in his room because they are thinking he may have C.diff again. As I stated yesterday, it is just one big vicious circle. They try to fix one thing and it messes up something else, then they try to fix that and something else goes wrong. My social worker came by and suggested I try to find a support group for "care givers" because she says that's basically what I am now since I'm taking care of everything at home for Ben. My friend Linda told me there is such a support group at our local senior center so she is checking into it for me. By 12:00 noon today, Ben was non-responsive again. He had been on the breathing trial for 4 hours and I think it was wearing him out again. I'm thinking if they find that he has C-diff, they'll send him back to ICU. Marla and I went to lunch at 12:00 and when we came back about 12:45, Ben was asleep and still on the breathing trial. We decided to leave and let him rest. I just get more and more frustrated.

Sunday Update For Ben

Today turned out to be another discouraging day for me. Ben was sleeping when we came into his room. His vitals were good except he was running a fever of 100.3°. They were sending specimens out for cultures again. We could barely get him to try to open his eyes. He tried, but was not very successful. The respiratory therapist came in at 9:30 AM and put Ben on his breathing trial. He was not going to try it at first, but then decided to give it a try. Ben only did 2 1/2 hours before he was gasping for air and they put him back on the ventilator. The respiratory therapist told us that the surgeon had mentioned that they want to come in and checkout Ben's belly again. I know they've been taking ultrasounds and scans, but they seem really stumped as to why the distention will not go away. When Dr. Shin and the nurse Elesa came in this morning, I asked if they could put his bed in the "chair" position on the days he is more alert and awake because I think it would be easier for him to breathe without his stomach pressing against his lungs from lying down too much. They seemed to be open to the idea, but not today and Ben was totally "out-of-it" again. Ben is back on the TPN which makes his blood sugar go up and then they have to give him insulin again. They are giving him extra potassium because now they are giving him water and Lasix to make him urinate more. It's just a vicious circle. They put him on the Fibersource before and his sodium went up, so they stopped the Fibersource because they said he was no tolerating it as well as he was before. Certain things they give him makes his arms, hands and legs swell, then they give him other things and the swelling goes down some but then causes other problems. Everything seems to make his stomach bloat. They have been suctioning out his stomach fluids, but his stomach is still huge. There does not seem to be a happy medium. The way he was today, I do NOT see him being moved to an outside unit for a long time as he seems too unstable to me. I really have the feeling that these Kaiser doctors are totally stumped with Ben's case. I felt the Henry Mayo hospital doctors had a better idea of what was going on and I also feel that if Ben had not been transferred to Kaiser from Henry Mayo that he would have been home weeks ago. I really with Kaiser was NOT the only health plan Lockheed offers to me that I can afford. This is why I never wanted to have Kaiser Insurance for all those years I was working at Lockheed. They "claim" that Kaiser is one of the highest rated hospitals for its care and for its doctors, but I've always felt they are one of the worst. We only stayed 3 hours at the hospital today as Ben was so out-of-it that he didn't even know we were in his room. I think this latest fever has gotten him down. His nurse said that after she gets all of the specimens for running the cultures, she would give him some Tylenol. So all in all, this was NOT a good day.

Saturday Update For Ben

Marla and I got to the hospital a little after 9:30 AM. they had put Ben on his breathing trial right around 9:30 AM. His vitals were very good today also no fever. They told me that he was on the breathing trial yesterday for a total of 8 hours which is fantastic! They are talking about putting him back on the TPN (Total Parenteral nutrition) again because his they need to get his stomach working more to try to get the bloating to go away. Also they said that he was not tolerating the Fibersource through his NG tube as well as he was before. The kidney doctor came in and said his kidney function had improved from yesterday. Dr. Shin came in and said that their main goals right now are to get Ben's kidney function totally back, lower his sodium levels, get rid of his swelling and get him moving around more. He said that Ben's blood levels were much better today too since they gave him transfusions yesterday. Ben seemed a lot more awake this morning before lunch. He was making faces at us and looking around the room. The move "9 to 5" was on TV so he was watching that some. Since the physical therapists do not come in on weekends, I did his basic exercises with him. He helped me with a few of them. Also when Elena (his nurse) came in to take his blood sugar or do other things, he was being very cooperative with her. He also does things like rolling his eyes and making silly faces, which shows he still has his sense of humor. Marla and I we out to the waiting room to have our lunch around 12:00 and when we came back 30 minutes later, he was pretty sleep. He had been on the breathing trials for 3 hours by then and he was still on it when we left around 1:00 PM.

Friday Update For Ben

Ben was a little more awake when I came in this morning. They had started his breathing trial at 7:30 AM. I spoke with the surgeon (Dr. Rupp) and she told me she sees no blockage in his intestines. As before, she tells me his stomach will go down once the physical therapists start getting him on his feet, but who know when that will be as no physical therapist showed up today while I was there. I asked at the nurses' station when one would be coming and they told me one had come in a 7:45 AM and another came in at 10:00 AM. Now I know for a fact that none came in at 10:00 AM because I was there then. I told them I want a physical therapist working with him EVERY DAY! When my social worker stopped by to see if I needed anything, I told her that they claimed a physical therapist had come in at 10:00 AM and I was there at that time and none had come in. She said she was going to put that in her notes and report it to the doctors. They are still suctioning out Ben's stomach and during this, they are NOT tube feeding him again. They are giving him "free water" through his IV to try to flush out the sodium that has built up in his body because that too is causing the bloating. I actually thought his belly looked a "tiny" bit smaller today, but it's still huge. His arms and hands are less swollen and it appeared that his thighs were not as swollen today too. Since no physical therapist came in while I was there, I worked on Ben's exercises for about 15 or 20 minutes in the morning and then again for about 10 minutes in the afternoon. He helped me a little with bending his knees the first time I worked with him and then he helped more with his arms when I worked with him in the afternoon. Lanny and I have an appointment with a senior advocate who helps seniors know their financial rights and obligations tomorrow. He does this service for free. We have to meet him at his home office. My social worker said he really knows his stuff. In fact she said the social workers at the hospital often call him for advice. My friend Marla called me from the airport last night. She will be at my house tonight to stay with me for a few days. When talking to her on the phone last night, I started to cry some. While I was with Ben today a kidney specialist came by to talk with me. She said his kidneys have taken another hit and their function had dropped a little again. She is the one who has ordered to give him a large amount of "free water" to help flush his body. Dr. Shin who is his doctor today called me on my cell. He said Ben has become anemic again and so Dr. Shin is ordering some blood transfusions for Ben. I looked to the north from Ben's hospital room window and saw that the sky was black towards where we live. I told Ben that the weather was getting bad and I'd better head home and he shook his head yes because he doesn't like me driving out in the rain. I had sun & clouds about half the way home, but then it started raining. When I got to the Newhall Pass it was snowing and it was sticking to the ground. I got off the freeway because the snow was really coming down hard and I could not see very well. I ran out of the snow and then it rained the rest of the way home. After I got home, the sun came out for about 20 minutes and now it's all cloudy again. Strange weather. I'm included a photo of the view from Ben's hospital window. But where they have his bed, he cannot see the window.

Thursday Update For Ben

Ben was asleep when I came into his room this morning. He opened his eyes when I said Good Morning to him. He seemed totally out of it again. His vitals were pretty good. His temperature was 99.9°. I found his nurse Dennis who told me that they tried to start Ben on his breathing trials this morning but he only did 15 seconds and could not breathe on his own so they said he "failed" the trial today. They said they would try again tomorrow morning. The respiratory therapist told me that it could be because he did 3 days in a row with 3 to 4 hours of breathing trials and he is just wiped out from that. The physical therapist did not come today because he was too tired to work with them, so I worked with Ben's muscles from. He could not really help me, but I moved his arms a legs for him in the morning and then again after lunch. My friend Judy Arbogast came and bought my lunch at the cafeteria again today. It's nice to have someone who knows me that I can pour my heart out to now and then. Thank you Judy. Yesterday my social worker gave me the name of a fee free senior advocate and told me to call him for information on how to file for Ben's Medical. He is an ex-professional who now volunteers his time for free to seniors to help them understand their financial rights and obligations and how to file for financial help from the state and/or federal government. He said I can come to his home office and he will help me. He suggested I bring Lanny along with me to help me out with everything. Now I need Lanny to tell me when he's available to meet with me and the advocate at his home office in Sunland, the town I was raised in. I also spoke with one of the ladies at the Kaiser Santa Clarita Insurance Office who was so helpful back when I was having problems getting Ben's SDI started for the first time. I asked her about filing long-term disability because my social worker and Ben's case manager had told me I needed to file for it asap. Eileen (from the insurance office) told me NOT to file for it now because Ben is entitled to a full year of SDI and the long-term disability only kicks in after SDI runs out. She had me notified our primary doctor and have him extend Ben's SDI until July 1st and she has already sent the papers in for me to do that. She told me that around June 15th, if Ben is still not ready to return to work for me to have our doctor extend it again. While I was with Ben today, Dr. Awad from Internal Medicine and Dr. Connado came in together this morning to check on Ben. I asked them about his huge belly. They said that they are going to run some x-rays and other scans on his belly to have a look. Dr. Connado said she does not think there is a blockage because they can hear a lot of gastric sounds in Ben's stomach. The swelling on his arms and hands was down quite a bit today. Both doctors said that his sodium level is too high and they are trying to fix that problem. Dr. Awad mentioned that he thought Ben was diabetic. I said he never was before and when I spoke with the nurse, he told me that Ben's blood sugar level was normal and that he sees nothing in Ben's records stating that he is diabetic. I've been trying to explain to Ben that he may be going to an outside facility to help him get stronger. Don't know if he understand or not. A long time friend of mine, Marla Benedict, is flying out from Oklahoma today to stay with me for a few days. She and I go way back. She used to work with me in Burbank at Lockheed years ago land she used to date my brother Keith. She will fly in today, stay at her brother's in Burbank tonight and then come over to my house sometime tomorrow. When I got back from lunch, Ben was still asleep. Ben's nurse Dennis told me that they have started giving Ben dextrose again because they have stopped his liquid diet through the NG tube and they are now suctioning the fluids out of his belly again to try to make the bloating to go down. Later they will do the abdominal x-rays. Hopefully they will find the cause of his bloating so the pressure will come off of his lungs. To me, he does not seem to be getting any better.

Wednesday Update For Ben

Linda drove me to the hospital today. It's nice to get a ride at least once a week because that driving can really get to you. Ben's vitals were good, but he was very tired. Manjit, Ben's nurse said that the Tracy, the physical therapist had come in before I got there but said she'd come back when I was there so I could help her work with Ben. She came back around 10:00 AM. She started working with his legs, but he was just so tired and sleepy that she could not get him to cooperate very much. She said she'd try to come back later because she wanted to try to get him to sit up on the side of the bed, but I don't think that will happen yet because he is so weak. I tried to work with him on his arms a little later, but he was not awake enough to work with me either. I did all of the work for him, but at least I moved him some. His belly is still huge. I didn't see any of his doctors today as they came in early this morning before we got there. Nat, my social worker came in and gave me some paperwork on how to apply for Medical if need be later down the line. She was going to help me with long term disability but said that she had made a mistake by thinking there was a form online. She gave me some other paperwork that tells me I can call and make an appointment with someone at Social Security to figure out what I need to do for that to get started. She also gave me the website, phone number and email of a man named Bill Fisher who is a medical/financial senior advocate and he offers free advice and is very knowledgeable about these things. So I'm going to check out his website in awhile. They started Ben on his breathing trial at 11:20 AM. Linda and I went to lunch and when we came back, there we cleaning Ben up and repositioning him in the bed. He was still on the breathing trial when we left and I just called Manjit and she said he is still on it and they are hoping to keep him on it for another hour, so that would be four hours if he makes it. Ben looked so tired, that we decided to leave and let him try to get some sleep. On the way home, we stopped by one of the outside trach care units that they had given me the address for. It's called Country Villa Sheraton and it is on Sepulveda Blvd. in North Hills, CA. We spoke with a woman named Crystal. She is a case manager there. She showed us around the facility and told us what they offer and explained about the Kaiser doctor that comes there and about the nursing staff, etc. She said that the hospital's goal is get Ben stable enough to put him into an outside care facility. Country Villa's goal is to get Ben well enough to send him home. She said their main objective would be to wean him off of the ventilator and get the trach removed, plus they would give him physical, occupational and speech therapy. The unit is in a nice neighborhood and appeared to be a nice place. Crystal was very nice and answered all of our questions and gave me her card and told me to call if I have any more questions. I checked this facility out online and they have been given an overall rating of 3 stars out of 5 from user. We are going to check out the other facility early next week. It would be nice if Kaiser can get Ben into the one we visited today as it is only 16 miles from our home. I felt a little better about him going into one of these care units after visiting this one.

Tuesday Update For Ben

Today is Ben's and my 31st wedding anniversary. I'm a little sad because I did not get to spend very much "quality" time with him at the hospital today because so many people kept coming in to check on him and one of the Case Managers came by to talk with me again. They moved Ben from ICU to DOU this morning around 6:00 AM. It's good that he has moved because DOU is a step in the right direction. He is now considered in serious condition instead of critical. They started weaning him from the ventilator this morning around 9:50 AM. He was only able to do it for 1 hour and 45 minutes today. I was hoping he could go longer, but I think the move downstairs may have worn him out and then some people came in to examine any sores he may have and then the physical therapist showed up and then the pulmonary doctor (Dr. Chang) and then an Internal Medicine doctor (Dr. Awad). When I first got there, I did his exercises with him for about 15 minutes, but I no sooner finished when in came Brent his physical therapist. Brent worked with him for a good 20 minutes and said he could really feel Ben's muscles doing the work. He said Ben was helping him move everything and that he was doing well. Then Dr. Chang came in and check on Ben. He said that Ben was doing really good. The only thing this morning was that his heart rate started to go up when the put him on the breathing trial. that's why the ONLY let him do it for 1 hour and 45 minutes. I turned the TV on for Ben and then noticed that his TV glasses were not there. I went downstairs to ICU to see if they had them and they could not find them. I went back upstairs and started looking through the drawers and cabinets and I found them in his plastic tray. They are only cheap cheaters, but he needs them to see the TV clearly. Next, Dr. Awad came in and checked Ben. He said Ben's sodium level was a little high, so the lowered the liquid nourishment and gave him what the refer to as "free water". They put it into him through his NG tube. His arms and hands were not as bloated today, but his legs are still bloated and his belly is huge. They also gave him more diuretics to see if that helps relieve the bloating. That beach ball sized belly must be very uncomfortable, but Ben insists he is not in pain. Next the people who check for sores, etc. came in and looked him all over and medicated and dressed anything that they found. Ben fell asleep as soon as they put him back on the ventilator. Then the case manager came to talk with me. She wanted to know what the case manager from yesterday had told me about Ben maybe going to a trach care unit. She gave me the names and address of both units and told me that Ben's brother Lanny and I need to go check them out just in case. Please pray that Ben will be able to be weaned off of the ventilator at the hospital so he won't have to go to an outside unit. Ben's nurse Manjei kept telling me to go to lunch and let Ben sleep. I could tell she was trying to get me to go away. She doesn't understand that I always come and stay 3 to 4 hours with him since I live 25 miles away. I finally gave in and went out to the waiting room to eat my lunch. When I came back, Ben was totally asleep. They assured me that they had NOT given him any morphine because I again told them that I do NOT want him to have it. After about 30 minutes, I decided to head for home. He nodded a little when I told him I had to leave and that I'd see him tomorrow. Not a very good anniversary.

Monday Update For Ben

Ben was on the ventilator weaning test this morning when my friend Linda and I walked into his room. He breathed on his own for 4 hours before they put him back on the ventilator and he was totally wiped out when he was done. I sure hope he can tolerate it again tomorrow because the more he does, the sooner they can wean him. Lanny, Ben's brother was coming today because he and I had an appointment with the Kaiser Case Manager about Ben "possibly" going to an outside trach care unit. My social worker was there too. It worked out pretty good. The case manager told us that this was just to notify us that there is a "possibility" that he may have to go to this care unit. If the hospital can wean him off the ventilator, he will NOT have to go to the unit. THAT's what we are hoping for. They did say though that even if he stays at the hospital, he will have to go to a rehab center before he can come home. I had to sign a form saying that they can do CPR on him, etc. if need be IF he does go to the trach care unit. So everyone…PLEASE pray that the hospital will be able to wean him off the vent. Today the ICU doctor was Dr. Chang. He came in to talk with me. He said that Ben was doing better today. He said they did the ultrasound on Ben's belly and they discovered that he has gall stones and a fatty liver. They will deal with the gall stones later IF they become a problem. Doctor said that the fatty liver can reverse itself if been quits or cuts way back on his beer, he eats better and gets some exercise. Dr. Change said Ben's bloating should go away once he gets moving around more and works more with the physical therapist. Dr. Chang said so far everything looks promising. Ben was very responsive this morning before he fell asleep after they took him off the breathing trial. A physical therapist came in today. His name was Brent and Linda and I really liked him. He worked with Ben for about 20 minutes and Ben was very cooperative with him. Even did some of the movements on his own. I showed Lanny my letter from the Kaiser Grievance Department saying that the considered my grievance closed, so he called them. He could not make them understand that we want the grievance to stay open. Lanny is seriously considering having me file a malpractice lawsuit against Kaiser in the future. I feel really tired now that I am home because of all the stuff they told me during our meeting with the case manager. They were telling me all of these places I need to start contacting to check on possible long-term care if Ben ends up needing it and about getting long-term disability started for him. Even contacting Medical for financial aid because as long as Ben is on the trach, he is eligible for it. My head is just spinning around. I really hope I can get some sleep tonight. My social worker is going to help me fill out the forms for long-term disability probably on Wednesday in her office. There is just so much red-tape involved in all of this.

Sunday Update For Ben

I got to the hospital a little earlier than normal today because I had to go buy Lotto tickets and stop by the post office to mail a bill, so I just headed for the hospital after I did my errands. I sure wish the freeways were as empty during the week as they are on Sundays. Ben was asleep when I walked into his room. His vital signs were pretty good but his heart rate was up a little. His blood sugar was 125 and his temperature was 100.8° so his nurse Steve gave him some Tylenol. When I said good morning to Ben, he opened his eyes. I asked if he wanted to do his joint exercises with me. At first he did not want to do them but he finally gave in and did them, plus he helped me with them this time. We did his joint exercised three times today and would actually do them on his own some after I helped him. I would say "OK now lift your arms by yourself" and he did. I'd tell him "Bend your knees" and he did. I was pleased with that. He still gets really mad at me when I tell him he has to really want to get well for it to happen. I think he gets tired of me pounding it into his head. When Steve came in to do his hourly check on Ben, I told him I wanted a physical therapist to start coming in daily and work with Ben. Steve said he had just seen a new order from the doctor for a therapist to come in. Steve said hopefully they will start coming in tomorrow. I also asked if they had tried to wean him from the ventilator this morning. I was told the respiratory therapist came in and tried, but Ben just could not do it again. They tried for about 5 minutes, but Ben's heart rate went up and he was gasping really hard. When Steve was doing one of his checks, he was looking into Ben's eyes and I mentioned to him that Ben had eye surgery back in October and he was supposed to be having the oil bubble and cataract removed, but I had to cancel his appointment for the consultation with his eye doctor and that I had emailed Ben's eye doctor. Steve said he was going to put a note on the computer for the ICU doctors telling them about this and to find out if they wanted someone from Ophthalmology to come in and check Ben's eye. One thing I really like about Steve is that he does not like to give patients narcotics, so he will NOT give Ben any morphine unless the doctors insist. I was told that they have an order for an ultrasound on Ben's belly. They are still saying they think it is gas and NOT fluids that are making it distended. Ben was pretty sleepy today, but he would open his eyes sometimes when I say something to him and when the nurses came in to check on him. I asked again about what they think is causing him to have these low-grade fevers. Steve said that sometimes when they take a patient off of the antibiotics after they've been given a lot of them, they will develop a low-grade fever and they had just taken Ben off the antibiotics. All of Ben's cultures are still coming back negative. I had two nurses today tell me that they do NOT think Ben is ready to go into an outside unit away from the hospital yet and they told me that if I don't want him moved yet for me to voice my concerns "loudly". I still cannot understand why Ben was so alert and active right after his tracheotomy and now he's back to being really tired again.

Saturday Update For Ben

I was expecting to walk into Ben's room this morning and see him the same way he was when I left him yesterday afternoon, but I was wrong. I was very upset and frustrated today. So much so that I vented on his nurse Jessica and the charge nurse Nerissa until they called a social worker to come in and see me. Ben was very out of it again. Jessica told me that the night nurse had given Ben some morphine this morning because when they asked if he was in pain, he nodded yes and also because his blood pressure and his heart rate were up quite a bit. They wanted him to calm down and sleep. I totally lost it telling Jessica that Ben is NOT ready to be moved from the hospital to a Trach Care Unit. His stomach is still very distended. They tell me that it is only air and NOT fluids. I told them that Kaiser does NOT care about the patients just how much money they can save by moving him to an outside care facility. I told her I wanted the doctor to come in so I could talk to her, but the doctor never showed up. The charge nurse called in a financial consultant to talk to me because I am worried that if they move Ben out of the hospital into the outside unit that if it takes more than 60 days for him to get well enough to come home, I cannot afford to pay for the facility. The financial consultant was a big waste of time. She told me that if it takes more than 60 days, I will just have to try to get help from the state like Medical or Medicare. I told her that we have a house and money in the bank and after hearing that, she said that we would probably not qualify for help from them unless we depleted our savings. I told her that was BS and I did not use the initials, I used the word and said it loud enough that everyone was looking into Ben's room at me. She mentioned possibly getting long term disability. I have no idea how to do any of this. The room nurse and the charge nurse kept telling me that the doctors will not let Ben leave the hospital until he is well enough to do so and when I asked "then why did a case manager call me to set up an appointment to start the paperwork to have him moved out" they said they still didn't think that would happen for at least a week or so. They will move him to DOU first. When the social worker came in, it was not the one I've been dealing with, but she told me that they all share their cases in the event that my regular one is not there. The social worker Jean sat with me for over an hour and just let me vent and cry my eyes out. She said she is going to get a hospital ombudsman to come see me because of my complaints and concerns. That will probably be on Monday. She also told me that I need to find someone to come and stay with me again because I am too distraught and depressed. Everyone keeps telling me that it's a good thing that Ben is "well enough" to possibly leave the hospital and go to a outside care unit in a week or so because that means he is doing much better and the doctors feel that this is the best next step for his recovery. That IS a good thing but then I start to worry again about the financial side of things. Around 11:00 AM, Ben's heart rate went way up. I ran and got his nurse and she checked his blood pressure and said that he was ok. She told me he HR does that every once in awhile. When I came back from a 20 minute lunch break, they positioned Ben's chair to where he was sitting up as if he was in a chair. I set up his little DVD player that I got for him to see if he would at least listen to an Andy Griffith DVD, but he was sound asleep. When he did wake up for a little while, he was really angry and was trying to "yell" at me and waving his hands all over the place. Then he went back to sleep again. He was still very out of it even when I left at 1:30 PM.

Friday Update For Ben

Just got home a little while ago. They inserted a trach tube into Ben's neck this morning at 10:30 AM. The surgeon said he had no bleeding and everything went very well. Now Ben looks more relaxed and more comfortable. His vitals are good, color is good, no fever and his blood sugar is down to 102. I met Dr. Connado today. She is his ICU doctor right now and she was very nice. She said it's time to move Ben to a "secondary unit" which I assumed meant he would be going back to DOU. She also told me like the other doctors have told me that his recovery is going to be a long a slow one because he is so weak. She also said he looked much less swollen to her today. They still have not yet figured out what has been causing the fevers now and then but that they have bombarded his body with antibiotics and they are hopeful that this will stop the fevers. I was very happy about all of this until I got a phone call from a Kaiser case worker. She told me that they now want to move Ben to a "Trachea Care Unit". The nearest one to us is in North Hills about 25 miles away. They are going to have someone come talk to me on Monday about moving him and what happens then. I need to write a bunch of questions about this move and what they do at this place. Now I'm a little upset again, even though Ben seems to be doing much better now. I'm attaching a photo I took of Ben this afternoon.