Thursday, 7/30/09

We are learning that things are very different on this floor than the usual Myeloma floor, even though we can see that floor from here.

It's nothing major, but enough of little things that are driving us insane and making Pete feel uncomfortable and ready to escape this room.

We have had a tech the past two nights with a real attitude problem. She was argumentative and loud with no consideration for anyone trying to sleep. She insisted at 11:30 and 4:30 that Peter get up and weigh. Not only is that not something that you would want to wake up someone for, but you risk having the patient get lightheaded from laying down and then standing up suddenly. It's insane and asinine.

Two nights ago she came in and it had only been 10 minutes since the nurse took Peter's vitals at the end of a blood transfusion. I told her this since we had just been trying to go to sleep and she wanted to argue about needing to do it and having her orders. He's just had his vitals taken three times during the transfusion and a fourth time was ridiculous.

She came bombarding into the room again, letting the door fly open and scared us, at 4;30 that morning and asked "if I would allow her to take vitals". That was uncalled for and I mentioned this to the nurse the next day.

We have also had a time because there was an error on a lab report, which happens, and the doctor reacted by ordering blood glucose sticks every few hours which we refused. It was a pain for two days though because someone new kept coming to do it and we had to refuse and they had to tell us how we needed it and we refused. It was tiring. We were lucky enough to have a good night nurse who took the time to review all our labs and found that they were all fine except this one and all before and after were fine. We finally got to see the doctor today to have that canceled.

On the Myeloma floor they have "food ambassadors" that are very good at handling all your food needs. Here, they don't even do anything with the menus that you mark for what you want and don't come to pick up the trays when you are done and are people with attitudes that appear to only be here to collect a paycheck. The techs have said the problem is widespread across this floor and not just with us. They are having to pick up the trays themselves after every meal hours later and deal with complaints about not getting what is ordered and seeing people throw away the menus.

Peter felt pretty good yesterday in the morning and then got tired and slept. Today he felt pretty decent all morning. He ate a bigger breakfast than normal. He had a shower and sat in the chair for a little while. He worked with physical therapy. He told everyone that would listen that he wanted out of here.

The renal team said that things are moving in the right direction and that if tomorrow continues the same then they didn't see any reason he couldn't go back to outpatient status. We requested a wheel chair, though I don't know how I could fit it in my packed car without unloading it first.

The only problem today was that the tech tried to overwhelm him by doing the bed, weight, and vitals all at once and in a hurry. His legs gave way while he was waiting for the scale to read and the poor girl couldn't deal with an emergency. She clearly didn't know what to do. She couldn't move to hit the call button and froze. I was holding Pete and couldn't reach the call button but was trying to tell her she needed to call for backup. She went running out of the room and got his nurse in a panic and she paged the doctor as an emergency. The nurse put him on oxygen and Peter said he felt fine he was just too weak to stand after having the shower, getting to and from the shower, and sitting in the chair for half an hour while I paged for the bed change three times. Guess I should've just done it myself. Heaven knows I've done it before.

Pete is down to 183, which he was the last time they weighed him two days ago. He's lost all his water weight and his blood pressure is so low that he isn't on any blood pressure medication. It will take a couple of weeks probably until the kidneys are back to where they were.

The doctors also confirmed that the heart test showed that the heart has been damaged by chemo and the bottom two chambers are not pumping enough. The heart may repair itself or may always be weak or may need to be controlled with medication.

We'll see what happens tomorrow. I need to go to work as well as get us a place to stay. I requested a hospitality house as we're broke and I need my paychecks to pay for bills at home, but I don't think we qualify anymore. We did get some help to get one of the extended stay places to honor a deal they had on the Internet that they wouldn't honor when I attempted to get a room there when we first moved out of the hospital the last time.

Tomorrow is Friday. We'll see what happens.

Tuesday, 7/28/09

Yesterday I stayed at the hospital all day to try to be there for any decisions and visits. We saw the doctor that we'd had over most of the last two months in the hospital and she requested a renal consult.

She ordered extra platelets assuming that he would need to have a new set of lines placed to do dialysis immediately.

The renal fellow came and spent a lot of time interviewing me about Pete's condition. He was very thorough. He said he didn't see any need for immediate dialysis because even though he had too much fluid, nothing else was out of balance. He said he would consult with his attending physician and get back to us.

Yesterday they wanted to do an ultrasound of the kidneys. Pete had refused before, but they assured him that it wasn't painful and would only take about 5 min. He had these in the past in the room, but they said he needed to be taken downstairs in his bed. He also had to fast for 6 hours before the test.

They took him down about 2-3:00 and he was gone forever. I guessed that there was a wait on transport to bring him back up. The nurse kept checking for him as she had several new orders and needed to get him here and get started on them. He didn't arrive back at the room until 6:00. He was highly agitated and stressed because he asked 4 times about coming back to the room since the test was only 5 minutes and each time they stated that they had called transport. He hadn't had anything to eat or drink and was thirsty and needed to go to the bathroom. He was just stuck in the hallway for hours.

They started him on a small amount of fluids and a diuretic. They also ordered labs every few hours so that if certain changes happened or he was urinating too much they could adjust and not wait too long.

Pete was so stressed out that he asked for an Ativan and went off to sleep. He asked me to please stay with him and not leave him. He asks for so little that even though I'd had a tough day trying to work remotely and coordinate everything I didn't want to deny him and go back to the hotel.

I figured out how to pull the fold-out chair in the room to make a bed and attempted to sleep there for the night. We were constantly interrupted. I would no sooner get sound asleep and something would happen. There were vitals, extra labs, someone emptying trash, several times of urination and just constant disruptions.

We had interruptions at 5:00 with trash collection which wasn't long after labs and then something at 6:00 followed by a rude awakening by a tech that came into the room at 7:00 sharp and flipped the overhead light on. I jumped out of my skin and out of bed and stopped myself short of breaking her arm! I asked her what in God's name did she think she was doing? I think I scared her.

She was all bubbly and was there to take vitals as well as announced that she would be in every hour to write down what Pete had to drink and check for urine. I told her that turning a light on for a patient that was sound asleep as dangerous and too shocking. I also told her that she would not be coming in every hour and informed her that I was quite capable of calling when there was urine to be emptied. She had her orders and was not going to go away easily. I was so tired I just wanted to be left alone.

We finally worked things out with the nurse and throughout the day I was sure to let someone know when there was urine to be emptied. The tech didn't like the way that I handled the intake of fluids, but I wasn't backing down any.

We also had a rude awakening of someone coming in to say that they were there to take Pete downstairs for an echo test of his heart. I told him that we didn't know anything about that and refused.

We saw the kidney fellow again who examined him and said he still didn't see any need for dialysis and that he and the rest of the team would be by later.

We saw the regular doctor here in the hospital that is assigned to us. She said she wanted to make sure that the heart was pumping enough because of the kidney function and the need for oxygen it might be damaged by the chemo and the echo would check that. I told her what happened yesterday and she asked if we would agree if the test was done in the room. I told her I thought so.

The renal team came by and the attending physician was most pleasant and confident. He said that he felt very sure that the kidney function was a result of one of the chemo drugs that is known to damage the kidneys. He explained it all as well as the fact that he thought the fluids were not staying in the veins, which I'd also heard once before. There was also a blood test that he wanted to do just to be sure of one other thing. He didn't see the need for dialysis and was going to stop the diuretic because of dehydration and explained the fine balance of too much fluid and not enough.

I told him that I didn't think this was magically going to be fixed overnight and he agreed. He said even though this team would only be on for the rest of this month (this week), he was sure that they would have some clear direction before then.

So we'll just watch things and adjust as needed. Even though his kidney function isn't good, it's not getting worse and his electrolytes are staying even. These are good signs.

I would expect that he would need to remain in the hospital for another week or two until all this stabilizes. We really don't expect that he'll be able to get any more chemo and believe he has already had too much. It's not having any effect on the Myeloma anymore and is only doing harm now. Time to switch to some other plan. I've asked the doctor to please ask Dr. Barlogie on Thursday rounds about the drugs that he was trying to get us on. I am sure we can't do anything until he's in better shape, but we also can't wait too long or we'll never be able to get it under control.

I've moved out of the hotel room and will stay at the hospital for the rest of the week regardless of how uncomfortable it is.

Sunday Update

At 3:00 PM I finally went to the nurse and demanded to see someone and asked why no doc on the weekend, renal or otherwise, had been in to see us. She said that the docs were there early this morning and left. She assumed (I think) that we had been seen. She immediately paged the doc and then came and told us that Dr. K. would be over shortly.

He did come over and give Peter a good examination. He asked a lot of questions and looked over the doctor's orders and chemo orders that I had on hand. He said that the chemo may have affected his liver function and since non of his electrolytes were up that even with the BUN level so high he was not going to do a renal consult and was not overly concerned. He said with overweight people sometimes the BUN is not accurate from what I gathered.

He's going to continue on the diuretic and doesn't believe he is fluid overloaded or in danger. We'll see what tomorrow looks like.

I feel better because this is one of the doctors that I actually trust.

I will go back to the room about supper time and do some laundry and pack up some of our things. I plan to move out of the hotel this week when our paid time is up and see if the social worker can get me into a hospitality house for now. I'm broke.

Sunday, 7/26/09

I realized that there has been a lot of missing information over the past week or so. Things have been extremely hectic and now Pete is back in the hospital. Let me try to recap.

We started going to the Infusion Center Clinic on Thursday, 7/16. We put off the chemo until Friday to give the solution that was to be put in his lines to clear them up 24 hours to work before the chemo was to begin. The charge nurse was really great about getting everything arranged, making sure details and paperwork was in order between the doctor's office and their office, and setting appointment times in the afternoon that allowed me to go into work each morning. Thank you Nurse L.

The nurse we had on that date didn't put the solution in his line because he didn't think there was a problem or need. He said they seemed to be flowing fine and it must have just been the nurse the day before.

Friday of that week we started a 14-day bag and two pumps of chemo. It was late starting because the APN kept ordering other IV's and such to be given and the lines couldn't be used until they were done. We got started with chemo about 5:30 that night.

The weekend was pretty routine with trips to the clinic, chemo bag changes, IV antibiotics, platelets. Peter was doing O.K. and we both took advantage of the weekend to get caught up on some uninterrupted sleep.

This past week went totally haywire.

Monday started off with a bang with a blown transformer and fused ground wires at work causing a loss of electricity. I went back to the room about 11:30 when they were going to shut the server down and move us to generator power until the electric company could get it fixed. When I got back to the room Pete had a fever of 101.6. It's a good thing I happened to come back early. I gave him some Tylenol and he didn't have any fever at the clinic, but his CRP was going up. Our really quick-thinking APN wasn't on duty and the one we had was more of a slow and cautious type. I couldn't make her understand that these things generally get out of control with Pete and that we needed some action.

I had reserved a room for a week's rate on Tuesday of the previous week when he was discharged so Monday night was to be our last night. I'd had several shots that I thought were going to work out on an apartment, but they all fell through. I found a Value Place motel chain that had less expensive weekly rates than we had paid and had a kitchenette and not just a microwave and small fridge. I thought that would give us the opportunity to at least cook more meals and save money eating out as well as to save money on the overall week's stay. Boy was I wrong!

I took off work on Tuesday so that I could pack up what we had in the room and load the car and get us settled at the other motel across town. We also had our clinic appointments and wanted to get there early that day. It was pouring rain all day.

The Value Place only had one room left and it was down a long haul. It was too far for Pete to make it with his walker and he was very short of breath. I kept trying to get him to go back to the car and we were stuck in the middle of the distance for the longest time. He insisted on making it and then collapsed on the bed. I was feeling terrible now since at the Rodeway Inn he only had to walk from the car right in the door. This place was terribly sparse and they didn't have any handicapped access rooms available so there were no grab bars or raised toilet.

I let Pete rest and tried to figure out what to do. Their office was only open 9-6 so I couldn't go and ask for a refund. Our old motel had rented out all the handicapped rooms.

Pete was very uncomfortable and there wasn't a chair he could sit in and he couldn't lay down and breathe comfortably. I finally got him back to the car and we just drove around so he could sleep. I drove all around Little Rock and outside of town. He slept comfortably while I drove, but I was getting very tired.

At 7:00 I stopped at the old motel and they said they would have a room after 9:00 that morning. I wanted to request my money back at the new motel and they didn't open until 9:00. I drove to a secluded area near the new motel and we parked and slept quietly in the car. I felt terribly guilty for not taking any better care of Pete than this.

At 9:00 I went to the office to ask for a refund and the office person had received my voice mail message. He said someone moved out of a room that was two doors from the fire escape that he could let me have. I really wanted to be back at the Rodeway Inn where I felt more comfortable, but I had the feeling that if I refused he would not give me my money back so I accepted.

We sat in the parking lot for a another hour and a half while they cleaned the room. It was a shorter distance, but was still too much of an effort for Pete. He made it, but I knew that I'd made a mistake.

I did some work remotely while he slept and then I collapsed in the bed too. We got up and went to the clinic early again and tried again to let the APN know that he was not feeling well and not able to sleep laying down very much due to a feeling of being bloated. She again did not make any changes even though his CRP level was going up in leaps and bounds. At the end of the day she and the charge nurse stood outside the room and asked each other who was going to ask me a question. They seemed afraid of me. They asked me if I could bring Pete in at 9:00 in the morning and leave him with them for the day so he could get 2 unit of blood, platelets, fluids, antibiotics and other things that needed time. I told them that I would.

During this whole week Pete's lines kept giving the nurses more and more problems. They would take fluids and chemo, but they would not flush or draw to be able to draw labs. They sent him for an X-ray on Wednesday because the APN wouldn't write an order for the clot buster agent that was supposed to have been given to him the week before without knowing if the lines had moved inside him. We then went into a huge battle between one specialist and another that disagreed on whether the line should be replaced. Finally at 5:00 the solution was ordered and left in for an hour. It helped, but really needed more time.

We'd had two days in a row of coming to the clinic early and then Thursday Pete spent the entire day at the clinic being cared for while I went to work. They called me a couple of times and updated me. They had given him diuretic to reduce the fluid he was complaining of and he'd gotten rid of fluids all day. They also gave him something to help keep the excess fluid in his veins and not go out into the tissue. He put out about 800cc.

Thursday night he was in complete misery. He couldn't lay down. He was short of breath. He's been on oxygen some at the clinic, but refused to bring any with him. He couldn't eat or drink because he felt so full. He couldn't even take his evening pills. He sat on the edge of the bed a good portion of the night. Of course I didn't get any sleep either.

Friday I had to be at work. They had scheduled an ultrasound for 7:00 and then for me to bring him to the clinic to stay again for the day. He told be about 5-6:00 that he was not going to do any of this. He said he'd had enough of torture over the past 3 days and was more miserable than ever. I tried to talk to him and tell him that the clinic was the best place to help him. I told him I would force another APN or doctor to see him or call and see if Dr. Barlogie was available. He just refused. He said he needed a break. I called at 7:30 and canceled, though of course I got a lot of resistance.

The charge nurse on Friday was less than nice. She said that he would need to be there no later than 1:00 if I was going to bring him at all. I told her why he was so dissatisfied and miserable and that I'd tried to suggest another APN during the week without being demanding and he'd had enough. I also emailed Dr. Barlogie.

Peter slept all day. I had a meeting at work and some things that I really couldn't miss so I went to work and came back at 1:30 in hopes of convincing him to go to the clinic once he'd had some rest. No luck.

Also during this time, since the lines needed to be used for IV's at the clinic and they had problems, they kept shutting off the chemo pump for hours on end. On Thursday when he was there all day the one bag that was set to go over 7 days ran out. It was expected to run late a day, but must have been run faster to overcompensate for the constant stopping. We have no idea the impact any of this has on the treatment. Thursday night they didn't start a new bag of the "red stuff", but only sent him home with his pump and the other "clear" bag that was set to be changed on Saturday afternoon at the clinic.

Saturday morning at 8:30 the bag ran out and the pump alarm went off. I pulled the batteries out of the pump to shut it off, disconnected the line, and clamped the line off.

Friday night we were up all night with diarrhea. Again, no sleep. Saturday we slept after the pump alarm situation until noon and then I started trying to get Pete to the clinic. Between being slow moving, having bathroom problems, and being so exhausted and out of breath we still didn't get there until 3:00.

The charge nurse that I talked to on Friday was working and was still less than friendly and seemed to be blaming me for all of this, which I wasn't going to stand for at all.

When we arrived on Saturday Pete was completely winded and asked for oxygen. I asked as soon as we walked in the door and they just told me to take him to the clinic and made no motions to get someone up there with some oxygen quickly.

One really good thing all week was that with the exception of one day, we had the same nurse almost every day that is someone we really respect and the other day we had one that we like a lot. We felt we were in good hands and the nurse we had so much took care of him on Saturday as well.

I told this nurse on Saturday when we got there that Pete really needed to be in the hospital even though he really wanted to be out of the hospital. I asked for his help. The charge nurse was still telling me that I was there too late, should've been there first thing in the morning, they couldn't help me, etc.

By a stroke of luck, the director of the hospital went by and said hello and I told him that we were in bad shape. He said he was going to stop in as soon as he saw another patient, but he never did. The nurse was hopeful that with him involved they could get Pete admitted.

They drew labs and waited. They had several other patients that were being admitted and were pretty busy with admittance. They tried calling different doctors to admit him, but each one wanted to pass the buck to another. The charge nurse was pulling her hair out at the childishness of it all. Peter was just sitting in a wheelchair with oxygen sleeping.

The charge nurse called in the director of the clinic who came in and talked to me and tried her best to play the game between the doctors. No one wanted to have responsibility. She told me the only way to get him admitted was to go to the Emergency Room. I told her that I didn't think he'd go for that and that we had a big co-pay to go to the emergency room. She said that was the only way and they were about to close anyhow.

Peter finally agreed to be admitted and had some antibiotics and platelets. They told me to drive around to the emergency room and that they would have him brought around there. They told me that because of so many people being admitted that there wasn't room on the Myeloma floor, but that they had a bed on the other level of the kidney transplant floor where he would be until a room opened up on the Myeloma floor.

That turned into yet another fiasco that I really didn't have the patience for. No one had called ahead and explained to the ER what they needed to do. What I explained to them was no help and they didn't know how to handle it. The clinic was closed and there was no one to ask. I was ready to take him back to the room and just go to the clinic first thing in the morning. I knew he was in dangerous straights as his kidney function had gone from a BUN of 55 to 98 and from last year's experience with dialysis anything about 90 is dangerous. He needed attention from a renal doctor. His blood pressure was still through the roof and no different from being on medication and his CRP had decreased hugely without being on any antibiotics for 48 hours.

I'm not even going into the details in the emergency room, but we were not seen by any doctor and only had blood pressure taken and told to wait. About 8:30 someone came to take us up to 7E. It took until 11:30 to get checked in. Pete sat in the wheelchair on oxygen and used up 95% of the oxygen tank and had his feet swollen from 3:00 until 8:30. The ER was most upset at the clinic for sending him to them for admittance. They seemed to indicate to me that it was irresponsible of them. I know they didn't have any choice, but the ER certainly didn't make it easy for us.

I emailed Dr. Barlogie of the situation. We were seen by a resident late that night who I informed of everything and stated that we would need a renal consult. I brought to her attention the current labs and what was most important at the moment.

It is now Sunday afternoon and we have seen almost no one in the room. It's a pleasant change in some ways and a chance to rest. There is no where for me to sleep here so I stayed until 11:30 and slept a few hours at the motel and then came back here at 7:00 this morning.

Peter is on oxygen and oxycodone which has him knocked out for the moment and sleeping comfortably. His labs show that his kidneys are not working and his BUN is now 103. I am very fearful of what is not happening. They gave him Lasix last night and today and he's urinated very minimal amounts so his kidneys aren't even putting out. He's starting to twitch as well.

He needs to be on dialysis and should've been on it already, but he will have to have a line put in to handle dialysis, will have to have platelets to support that, and I know they won't do anything on the weekends. I am afraid by the time someone takes notice here it will be too late. I can't seem to get anyone's attention.

This is not a Myeloma floor, but with it being a kidney transplant floor I thought they might at least have more knowledge and pay more attention to kidney function and have renal doctors available all the time. I don't even know if the resident actually did request a renal consult.

I am going to try to stay here as much as possible tonight and tomorrow to see this through.

They stopped the chemo in the clinic yesterday and from what the APN told me on Thursday, his tumor markers were going up anyhow. It will be up to Dr. Barlogie to decide whether it's worth going back on the chemo at some point or to go ahead and get him on the two drugs he's requested approval on, or do something else or nothing. Each month that goes by I think that we're getting closer to the end. Peter never thinks so. He's so optimistic that he just says "he's fine" or "I'll be fine." I wish I could believe that.

Wednesday, 7/15/09

Yesterday, with the help of a UAMS staff member, Pete was finally discharged from the hospital. The down side is that he had a switch from the great doctor that has taken care of him during his hospital stay to a doctor that we only have had limited experience with and been less than impressed with each time.

Much to our dismay, we didn't see his nurse from 1:30 when I arrived until we left at 5:30 or so. His dressing had been overdue for changing and we had to have that done today.

There was a list of medications along with a stack of lab copies on the table when I arrived. I made several attempts at contacting the doctor to ask what these medications were. I had passed her in the hall, but didn't know she was our doctor for the day. Still, I thought she would come in to discuss discharge instructions or see that I was there. She didn't. We didn't get to see her until very late in the afternoon and typical for her style she gave us the impression that she didn't want to discuss any details with us. That's what we didn't like about her before. In the past when we asked questions, she just told us we'd have to wait until we were outpatients and ask Dr. Barlogie personally.

When I asked about the medication list, she told me she had already told Pete about it and tried to pass it off at that. She also didn't have prescriptions for any of these mystery medications. Again, she tried to pass it off as Pete's fault. She claimed that he told her he had prescriptions. Fact was, he didn't know what they were or what we had or didn't have. He depends on me for that and doesn't remember her discussing any of it.

We never did get any real answers about the medications and she suggested we talk to Dr. B. about them when we see him tomorrow. So, we asked about the results of the bone marrow biopsy that our better doctor had ordered the previous week. The answer we got was that it was much worse. And that's just how she said it. Pete spoke up and said even after the super chemo that he just went through? She said yes, it got worse after the chemo and was trying to guess at a number. She guessed 80% or so. We kept asking if she was sure because we've never had this happen before. She left and came back and stated that it was 95%! She just blurted it out very matter of fact like the same way she told us "oh, no, it got worse". I was ready to string her up right there! No tact at all. Then after a pause and perhaps by seeing the shocked looks on our faces she dropped a "Sorry" and told us that we'd have to talk to Dr. B. about it and left.

We just sat there with our hearts in our stomachs and could hardly speak.

We went to our usual inexpensive hotel and they offered us a better deal on a week than our hospital rate per night so we paid for a week at the hotel. Pete wanted some Italian food and we found a place in the phone book that we thought we'd try to I called in an order and went and brought some great Italian food back to our room. We put leftovers in the refrigerator that we can warm up in the microwave.

Today I worked most of the day. I left at 2:00 to take Pete to the clinic for labs. For some reason we were scheduled at a different place and on the other side of the hospital from the doctor's appointment at 4:00. We were there well past our appointment in part from waiting and then in trying to do blood cultures and labs and discovering that one of his pic lines was not working. Since I haven't been at the hospital in recent days, I don't know if they've been flushing it daily or not. They tried everything and couldn't get it to work. They also changed the dressing since it hadn't been done in the hospital.

We went all the way across the hospital campus to our doctor's appointment since we thought it might save time from getting the car and driving to the other parking garage. Pete road in a wheelchair and I pushed.

We still had our usual 2+ hour wait to see the doctor, but our visit seemed slightly better than usual. It was as if he was getting to know us and we could talk a little bit. It gave us hope that someday we might be able to have an actual conversation with him.

He told us that it was bad that the chemo didn't help the Myeloma and Pete asked him some questions. The doctor thought and read and was clearly trying to figure out options and pick one.

We are going to start on a 14-day chemo bag with a pump that Pete will carry starting tomorrow. He also needs platelets as they are 18 and the minimum they want is 20. Then they are going to work on getting him approved for two new drugs on the market that are promising. The 14-day chemo hopefully will be administered very slowly and beat away any activity until the new drugs can be approved.

The nurse that came in after the doctor left wanted to try some stuff that could be put in Pete's line to free it up perhaps rather than replacing it.

He called the clinic where we'll be getting the chemo and told them that he would be faxing them orders on what to do tomorrow. He told them about the clogged line and they refused to do it. From what I understood, it had something to do with the fact that the clog was discovered on 7C clinic and needed to be resolved by that one. How ridiculous!

He called the clinic on the other side of the hospital where we had just been and asked them if they could put this in his line tonight so it could "soak" all night. They said they could and he rushed us out to get over there since it was almost 7:00 and they closed at 7:00.

He said he had talked to the doctor about the drug list, but had a new list and didn't give us a copy of it. He said there wasn't anything that he could do tonight since the pharmacy would be closed. He said he would take care of it tomorrow.

We rushed over to the other side of the hospital and it was 7:00. My cell phone rang and it was the clinic asking if we were coming. Yes, but we can't beam there! We left as soon as he nurse called them and told us to go.

We got over there and the doors were locked and we played heck trying to get into the clinic. When we got there, they told us that they couldn't get the drug to put in the line because the pharmacy was closed, but they had an antibiotic to give him. We were not notified of any antibiotic and refused it based on that. They had a real fit and said they already checked with the doctor. Turns out they called the stupid doctor that had been so worthless that had released us from the hospital! I explained that our nurse that just sent us over there had told us we were just getting this stuff put in the line and not to worry about platelets as they could be gotten tomorrow at the clinic.

We kept refusing and starting to walk out and they were getting really insistent. I was getting short tempered. I told them that he didn't receive any drugs via IV or oral from since before 1:30 yesterday. He didn't have any growth factor shot for two days now and his white count jumped from just over 1 to almost 2.35. His red count even went up slightly. Everything else was pretty good. My argument was that if this was so heck fired important then someone would have insisted that he had it last night.

We always have received discharge papers when we leave the hospital. This time I asked and was told that there weren't any. The nurse in the doctor's office today said that and the medication list were really not right.

Also there was mention about this bad doctor that there have been other problems so at least I know it's not just me or us.

I must go into work the next two days as much as possible. I'm also trying to find us an apartment that I can afford. I'm going to call the clinic in the morning and see if we can come in late in the afternoon and also try to find out if they can do everything that needs to be done. If not, I'm going to have to get someone else involved because I am NOT going to get involved in a pissing match between two departments. The patient is supposed to come first. It's just too bad that so many people disregard that for playing politics.

Sunday, 7/5/09

Pete is still in the hospital and doing fine except that he really wants to be out of the hospital and really wants to have some time at home. The only reason that he is there is because I can't be with him right now and he can't be alone without a caregiver.

His counts are coming up and this coming week he should have a bone marrow biopsy and PET Scan to see how much Myeloma is in his system now that he's finished this big round of super chemo. He handled it very well with no side effects even though this was a much stronger and very different type of chemo that he's never had.

I spent four days in June in Louisiana teaching a class and drove 7 hours back the night of the 25th to be with him. I came into his room about 11:45 PM and talked with him for a minute and then slept on the uncomfortable pull out bed they have in the new rooms. The futons were much more comfortable. I stayed with him all day Friday and Saturday. I was going to try to leave that Saturday to head for Roanoke, but because it was 101 degrees in Little Rock and I'd just spent the week before in LA with 103-104 degree temperatures I decided to sit it out for another day. There's always a risk of tire failure in the heat and between other drivers and trucks having tires coming apart, road conditions, and the long drive I waited until Sunday afternoon to leave. Pete was happy for me to keep him company though he mostly slept.

I drove 16 hours straight through and arrived home just after midnight on Sunday night. I had to call Cox cable and go around with them about our service interruption. I finally got the Internet service restored so that I could work from home with my new job and we could stay in contact. I was not able to restore the phone service and will probably change phone service this coming week. We are using the cell phone and Skype to make and receive calls as well as my work Blackberry phone.

I picked my son up at the airport Monday afternoon when he arrived from China via Detroit. We had lunch and spent the evening catching up and relaxing. Tuesday we had to make a rush trip to Pennsylvania to my dad's. He was having surgery for a cataract where they replace the lens of the eye and restore vision at the same time. It was quite an ordeal and we drove the 310 miles up there Tuesday evening and then drove 72 miles to Morgantown, WV where the surgery was to be done Wednesday morning. Thursday we had to take him down there again to have the patch removed and by a miracle he could see without the glasses that he'd worn for 60 years.

We planned to leave on Friday since we only had a week left to get things done at home and didn't relish the thought of driving in holiday traffic. Thursday night my father started having severe pain in his eye and Friday he needed to be driven to the hospital again. He insisted that he would be fine even though he could hardly see now and that someone else would be available to take him down the next day if needed. As it turned out, that wasn't the case and the saga is still continuing due to an infection in the eye from the surgery.

During all of this, our 17 year old cat was not doing well at the vet and we may have to make some tough decisions this coming week. I'm dreading it.

We talked to Pete each day and he was anxious to hear how we were doing each day and what was going on outside of the hospital. They have no clocks in the hospital room there and he has no idea what time it is unless he turns the t.v. on and see a time listed. It's driving him insane.

Pete did get to watch some great fireworks he said on the 4th of July from his view at the hospital.

He does not seem to be getting any emails and I suspect that it is because they built the new part of the hospital with a lot of the same room numbers and so there are about four different parts with the same room number of 722. He's on F7, but even putting that in front of the room number has not made a difference in email so I'm simply calling him twice each day to keep him updated and check on his status.

When I return early next week he will be more than ready to be discharged to outpatient status. We'll probably just stay at a motel for a few days until we can find something longer term.