Sunday, May 18, 2008

I am typing this as I sit next to mom's bed in the hospital. She is resting, which is a good thing.

I am trying to formulate what I think I should say about the last few days events, but know that no matter what I manage to type, its not really going to explain it.

Today for example... I drove here after getting a call from Dave at 1:30 this afternoon. He had been called by the hospital at 4 am because mom was "flipping out." I don't know how else to describe what he told me. I had stayed until after 11:00 last night. He had left about 10:00. When I left mom was resting, after a horrendous day. And so at 4 am he gets up and drives back to the hospital. When he had left last night she had been awake, but relatively comfortable. Between 11 pm and 4 am, apparently all hell broke lose. Mom wanted the tube out of her nose which is draining her stomach. The tube was put in at about 9 pm after learning at earlier in the day that her bowels were obstructed by tumors... And so Dave had been called back to the hospital at 4 am. He left at 1:00 to head home to sleep. And now it was 1:30 in the afternoon and once again, he was getting a call that mom was flipping out.

See this is where it gets complicated. There is somuch information, I can barely keep it all straight. But short of writing a book here, I am going to try to summarize some of the major events. (all times are approximate)

Tuesday - May 13 - 4 pm: she was admitted.

Tuesday - May 13 - 6 pm: x-rays/ct scans indicated no blockage, but lots of tumors.

Tuesday - May 13 - evening: Mom is not happy to be back in the hospital, but understands why she is here.

Tuesday - Wednesday 13/14 - overnight: Mom's meds were not ordered accurately and they did not get her Ativan. By morning she is a hysterical wreck.

Wednesday - May 14 - 7 am: Mom calls all of us from the hospital, one right after another multiple times. She is sobbing into the phone, "help me, help me." At some points during these calls she is in so much agony that it sounds like she is in being murdered as she holds the phone. I can't even begin to tell you how hard this was to hear.

Wednesday - May 14 - 8 am: Dave comes to the hospital and helps get her meds situated. This takes several hours.

Wednesday - May 14 - 2 pm: I come to the hospital. Mom basically slept the whole time, but when she did wake up she was in a lot of pain and nauseaus the whole time.

Wednesday - May 14 - 5:30 pm: Dr. Boente arrives and tells Dave and I that she is not responding to the chemo - I posted another blog after this meeting (below).

Thursday - May 15 - noon: We had a meeting scheduled with Dr. Boente at noon. Mom was in a lot of pain and had been vomitting for hours and most of the night before. I had to leave at 1:35, and when I left, Dr. Boente had not yet arrived.

Thursday - May 15 - 1:45 pm: Apparently Dr. Boente arrived. I missed him by less than 10 minutes. He was not optimistic and wanted to know how the family wanted to proceed. Dave was told that mom was not strong enough to handle any additional chemo. She would have to start eating on her own again if she was going to have a chance to fight this thing. He did order a "BAD" drip which is Benadryl, Ativan, and D_____ to help with the nausea. This had helped a lot the last time she was in here.

Friday - May 16 - I did not visit, but I did talk to mom on the phone. She sounded better than she had since she had been in the hospital. She still hadn't eaten but the vomitting had subsided. Dave had been there in the morning, but had went to work at 2:30.

Saturday - May 17 - 3 pm: Dave called and requested that we all come to the hospital for a 7 pm meeting. Dr. Savage had been in and there were new test results we needed to discuss. I told him that he had best just tell me on the phone, I wasn't going to be able to drive an hour while my mind was spinning around the potential scenarios. Dave told me that Dr. Savage (a partner/associate of Dr. Boente) had been in and said that in review of the x-rays, they had found that both her upper and lower intestines were blocked due to increased tumor growth. The doctor said that there were several options, but that he could not guarantee that any would help. Dave said that mom wanted to have a family meeting to discuss the options.

Saturday May 17 - 7 pm: We all met in mom's room (Ann, Ralph, Craig, Dave, me, and mom) and talked about the options. Based on the information we had at that time, we agreed that it made sense for mom to have surgery to try to remove the obstruction. Its possible that she will have a coloscopy bag after surgery, and depending on whether there is enough of her intestines left after the surgery she may or may not have one forever. We also agreed that we should have her moved to Mayo. We have been discussing this on and off every time she has ended up in the hospital. And even though we have made the bed to bed transfer plans before, Dr. Boente has convinced us to keep on this path. We met with the nurse in charge tonight too, and she explained the problems with the intestinal blockage. She also said that we should talk to Dr. Boente about the options for treatment and the transfer. Short term we agreed that she needed to have a tube run to her stomach through her nose (there is a name for this, I don't know what it is though) to pump out the fluid that is being produced so that she'll be sick less and not have as much heartburn.

Saturday May 17 - 9 pm: Mom was very brave when they put the tube in. I seriously don't think I could have done it. Ann and I literally held her hands down so that she wouldn't pull it out once it was half-way in. She was a wreck afterwards... shaking for an hour before she calmed down again.

And so, now we are back to where I started this thing.

Dave spent many hours at the hospital this morning trying to get mom stable again. According to the nurses, soon after he left, she got agitated again, so agitated that she called 911 to have them come and get her out of the hospital. She said she was going to divorce Dave and that she was going to have the nurses arrested for torturing her.

When I got here today she was still furious. She said that she had been abandoned, that no one had been to see her in weeks. She said she had been tricked into having this tube put down her throat and that it had to come out immediately. She told me she was going to divorce my father, that she wasn't going to stay married to Gene after this... (I didn't dare tell her that she and my father divorced over 25 years ago... and that her husbands name is Dave) She said she wanted to die. She wasn't going to live like this.

It took us until about 5 pm to get her settled back down. She has been sleeping since except when she woke up at 7 with pain again. From the time I turned on the light to get the nurse, from the time the meds were finally distributed, an hour had passed. By then mom was shaking and crying again from the pain.

Since she has fallen asleep, I had the nurse go over her history of pain meds today and it looks like it has been a mess all day. She was getting meds regularly until the 7 am switch of nurses. She got pain meds again at 9 am, and then not again until 4 pm. Once the pain meds wear off, it takes a long time to get things stable again. She should have had pain meds every two hours. Its not okay to have her waiting 7 hours for meds when she needs them every 2 hours. I have hung a chart on the wall with her two primary pain meds listed and the times listed down the side of the page, so that we can monitor it ourselves when we are here. In addition to the pain meds getting messed up we also learned just today that she is NOT supposed to be eating when she has this tube in. And yet, they haven't made any other plans to get her food. The nurses and nursing assistants have been encouraging her to eat. But with the tube in, every time she eats, she vomits, which, with the tube in her throat and nose is awful for her. I am seriously struggling what what I see as a lack of care being provided by a hospital whose job it is to provide care. Dave and I are trying to rotate shifts so that she isn't alone during the times when the hospital is short staffed. I feel like we don't have any options if we want to make sure that mom is cared for and comfortable.

Tomorrow morning, we are going to call to try to schedule a time with Dr. Boente when we can all be here again. We are hoping for one of two short term outcomes:

1) Move mom to Mayo and then have the surgery done there.
2) Do the surgery and then move mom to Mayo.

I have been working on writing this for the last 5 hours, and I know that it is disjointed and a lot of information. I'll try to review it and correct it later. For now, I am going to get going. Dave is on his way and I want to make sure we can get him a cot in here before I leave.