Sunday Night Call

I called and talked to Mom last night. I think I woke her up, but she went ahead and talked to me for a few minutes anyway. She remembered that I was supposed to call at 8 "yesterday" and I reminded her that it was Friday, and that I had called but she was probably asleep. I was just glad that she recalled it at all and was half right!

Other than that she actually sounded stronger than she had in previous phone calls, so that was a positive sign. She wasn't clear on what was happening with the chest tube, so I think we need to primarily rely on the nurses and doctors for any official information at this point. I haven't bugged the nurses in a while, so I'll plan on checking in with them this evening to see what I can find out.

Mom's brother Bill is travelling up to the valley tomorrow with his wife, Kathryn. I'm sure we'll get some more news from that visit. Jennifer continues to visit prior to going to her job in the afternoon, and I'm planning to head out there this coming weekend.

Good Day!

Wow! It sounds like Mom had a really great day today. She had a lot of visitors, and I got good reports all around. Her brother Bob came up from his job assignment in Pennsylvania, and his wife Mary, daughter Lauren, and son Daniel came up from Connecticut. Darlene also came with Kenny and her daughter, Lisa. My sister also came up with Conrad.

I got reports from Bob and Darlene, and they both said she had a really good day. She was awake, alert and coherent. She ate half her lunch while they were there, and Bob was really encouraged that she has backed off on using morphine, and is using a pill to manage her pain lately, he thought it was hydrocodone. Bob asked her about the plan to move the chest tube from the left side to the right side, and this was news to Mom, but that's not surprising as she was more out of it earlier in the week.

They both said that they had tired her out pretty well, and that she was resting after their visit. I may try to call later to see if she's up for talking for a few minutes.

Hunsicker Returned the call

I did hear from Dr. Hunsicker toward the end of the business day yesterday, and just didn't have an opportunity to post anything. She provided me with the answers to my questions, but doesn't have a positive long-term prognosis at this point.

They did not perform the pleurodesis yesterday. With the amount of fluid that continues to drain, they're concerned that it will just wash out the agent. I didn't quite get it, but I believe that she just referred to it as talc. The talc is supposed to fuse the pleura to the chest wall and prevent the re-accumulation of fluid.

As for the fluid itself, it was tested and did not contain cancer cells, nor did it have signs of infection. She was pretty surprised at this, but the fact that it continues to re-accummulate and drain is a continuing problem. She's not one to offer a lot of additional information, so I tried to ask as pointed questions as possible to get the most I could.

She went on to discuss "end of life" issues and I told her that she had completed a DNR order some time ago. She said that it wasn't referenced in her electronic chart, but that it may be in the paper chart. I talked to Jennifer about this last night, and she confirmed that Mom did complete this, and that Jennifer has some amount of oversight in this matter. Jennifer believes that this was re-affirmed during the hospital admission, but also has another copy of a document outlining this wish. She'll make sure that these wishes are better known as we proceed.

Jennifer did also say that Mom had a pretty good day yesterday, and made a point of drinking some ensure, and even ate some solid food. She was able to have some coherent conversations with her which has been rare lately as she's been sleeping most of the time.

Mom will be getting some visitors soon with Darlene (long-time friend and former sister-in-law) visiting this weekend. Mom's brother Bill and his wife Kathryn will be heading up on Tuesday and spending a couple of days, and I'm planning to head out myself next weekend.

I certainly don't know that the future holds, but unless something dramatic happens, it sounds to me like the hospital is in "do what you can" mode to make her comfortable. They're not pushing the food issue and leaving this to Mom because for one, she can still choose to eat solid foods herself if she wants. Two, inserting a permament feeding tube would be a more aggressive life-prolonging action, and while Hunsicker didn't say this explicitly, that's the feeling I was left with. They want to take action on the most significant, pain-causing items, (i.e. chest-tube to drain fluid) but when it comes to the feeding tube and ultimately the ventilator, they're going to make every effort NOT to utilize those.

Pleurodesis Part Deux

I haven't heard back from Dr. Hunsicker yet. Hopefully tomorrow. I wonder if she reads this blog?

Anyway, I got to talk to Mom today for a few minutes. Jennifer was at the hospital, and we worked out a way for her to call the cell phone without needing a calling card. (It's a long story, but it works..........) Mom asked me where I was, and I told her that I was at the office, and she just said that she was a little unclear on time, which is understandable. She went on to some other conversation and then came back to me, and said, "I'm a little spacey, don't I deserve to be a little spacey?" (It may not be a direct quote, but the sarcasm was definitely there which means to me that the lights are still on inside.) I talked to her about family, and Pauline (mother of her childhood friend, Gail, whom she's been recently reacquainted), and she understood what I was talking about and knew that they were going to do the Pleurodesis again this afternoon. She confirmed that her pain was still manageable, and then signed off.

I still pressed her to eat more, but it's still unclear how well that's going. I'm hoping to convince Dr. Hunsicker that while a feeding tube may be out of line at this point, I think she should still use the IV solution that she or Lynn mentioned. Any kind of nutrition at this point has to be valuable.

Not that anyone wants to think about this, but I'm also going to be talking to Hunsicker to make sure that the hospital is aware of Mom's wishes. She told me after Dad died that she signed papers with a "do not resuscitate" order. It was nothing I pressed her for, it was just something she told me after I had to sign papers to authorize them not to put Dad on the vent on that last day. I'm assuming that whatever papers she signed were more explicit about what circumstances were to be considered. I don't know how legitimate these are in New York, but in Michigan with my Dad and Loretta, it seemed like the doctor's just followed the family's wishes, and it was much better to know the patient's wishes when they had a clear mind.

If I don't hear from Hunsicker tomorrow, I'll plan to call and speak to the nurse tomorrow evening to get the latest status.

Message into Dr. Hunsicker

I left a message with the receptionist. Last week she was able to return my call at the end of the day, so hopefully I'll hear from her again at some point later today.

Another Pleurodesis

Sorry, but I guess this post is essentially a re-run. The were able to drain more fluid after moving the chest tube lower on Sunday, and they plan to do another Pleurodesis tomorrow to hopefully fuse the two linings together. In the reading I did, I didn't see that these are sectioned within one lung, but perhaps it's been sectioned by the tumor? Lynn the nurse was good about giving me the facts, but she cannot offer opinions.

The other thing that has me really worried is the fact that she still hasn't eaten much. They started giving her Megace last week to hopefully stimulate her appetite but she's just been very tired and sleeping a lot. She's also pretty disoriented when she awakes and is getting more and more confused. However, I think I would be pretty confused to if I hadn't eaten in 2+ weeks!
I don't really understand the theory here. Are the doctors taking care of the most significant problems, and then letting the things that are up to choice to Mom? Are they presuming that if she's not eating then she's given up? If she's confused now, is it really appropriate to presume that, or do they assume that a person's innate will to survive will override the confusion?

I think I'm going to try to connect with Dr. Hunsicker again tomorrow and pose these questions.

And the hits keep coming!

Mom's brother Bill was also up in the valley today and he called with a clarification to the earlier post..... Apparently they're not going to switch sides just yet. The reason why the fluid hadn't drained from the left side quite right was because the chest tube was inserted too high and needs to be moved to a lower area! Brilliant! Do they think that Mom is some kind of pin cushion? She had to have the tube in for about 9 days, and now it's moving to a different spot, with the promise of removing it and inserting one in the right side in a couple of days! How would you like to have that to look forward to on your list of things to do for the week?

Anyone have any GOOD news?

Well, there's no good news from the Valley today........... The CAT scan showed that there's fluid built up in both lungs. They can't do a chest tube on both sides, so they'll pulled the one out and put in a new one on her right side. The doctor's only hypothesis for Jennifer was that the tumor is causing irritation and instigating the build up. The good news is that Mom is not in constant pain. She is getting regular doses of morphine, so just as she starts to feel uncomfortable, she's able to get more medicine to get past it.


Today being October 7 also means that it's been one year since Dad passed away. We took Nate to the cemetery today to go see "sick papa" and he wondered where he was, and we told him this is where we come to remember him.

So all in all, let's chalk this up to a pretty crappy day!

I just wish Mom could catch a break because being cooped up in the hospital hooked up to all sorts of tubes can't be much fun. Is this what being on all these prayer lists gets you? The "wonder and mystery" of God seems downright cruel to me sometimes.

look at what came down in mary's back yard!

Cat Scan today

I spoke to the nurse at about 1.30p today. She said that Mom had just returned from getting a cat scan and depending on how that turned out, they may take out the chest tube tomorrow. The nurse said that Mom was sitting up in a chair, but she must not have been up for talking on the phone as she didn't answer. Mom's brother Bill is heading up there tomorrow for the day, so hopefully we'll hear more news as to how she's doing overall.

Hunsicker Called

Dr. Hunsicker called. She's not the most talkative, but she did offer quite a bit of information, and none of it was good. She said that Mom has not been progressing and "is not doing very well at all." She continues to have the chest tube in as fluid is still accumulating and likely now has pneumonia. Mom asks for her pain medication regularly, and the doctor said that Mom was quite disoriented this morning. She also said that Mom has not been eating hardly at all.

The doctor said that the "infections" expert is also going to be looking at things to make any recommendations for next steps. She said that she would keep track of my phone number and get in touch with me as necessary.

I did talk to Mom directly and she was a little confused at first, but then did get oriented and confirmed that the chest tube remained. She said that she's been eating somewhat, but that she was very tired and was going to lay back down.

Hunsicker not Huntzinger!

Well, I made some progress on my lunch hour (15 minutes?) today. I did some Yellow Pages searching and figured out how to correctly spell Dr. Hunsicker's name so that I have a phone number now, and left a message for her to call. Evidently I'm not on the HIPPA form, so she may not be able to tell me much, but hopefully I can at least share my concerns, and perhaps it may have some impact. I signed the release in the hospital, so maybe if she calls me from there, she can tell me something.

Update from Stella

Bill (Mom's brother) called last night concerned that he couldn't get ahold of Mom. I called to talk to the nurse's station, as I'm officially, "on the list" now and can get current status. They stop short of answering "opinion" questions, so I'm pretty good at asking questions they're willing to answer.

The short of it is that the chest tube was not removed as of 9p last night. Mom was very uncomfortable from the Pleurodesis on Wednesday and didn't have a good day at all. She was very tired on Thursday and likely was sleeping or had turned off the ringer. Stella (nurse on shift) also answered my questions on eating and confirmed that she hadn't eaten much, and I asked when the doctors would step in and take more aggressive action, and she said that they would when they felt it was necessary. Mom has been getting a lot of IV fluids, so there's no risk of dehydration, but at some point she's going to need to get a more steady flow of nutrition.

Hopefully she'll get the chest tube removed today, and then they can consider whatever's next in the process. I'm guessing at some point we should hear if there are any results back from whatever testing they did on the fluid that was removed over last weekend.

I had put a message into Dr. Razia last week, but she never responded, so I think I may try to pin down Dr. Huntsinger's number (GP) to see what information I can get from her.

Pleurodesis

There's your 5 dollar word for the day!

Here's some more info on it from Wikipedia: http://en.wikipedia.org/wiki/Pleurodesis. I realize this isn't the most authoritative resource on the Web, but the information I've found there is generally the type that helps me understand the basics. Anyway.................

Dr. Jezioro explained Saturday that this is what was planned, and it was done today. The chest tube is still in to drain whatever fluid remains, but they're hoping that the Pleurodesis will prevent any additional fluid from accumulating.

I asked if she's eaten anything, and she said not much, but they did give her a drug that would hopefully increase her appetite. Lynn said she has consumed some type of fortified milkshake, and will hopefully eat more tomorrow.

I asked about a feeding tube, or when it would be critical to do something more, and she said that while that's an option, there's a lot more they can do in the meantime. She said there's even some type of nutrition they can introduce through the IV, so one way or another they'll make sure she gets some nourishment.

Chest Tube Remains........

Talked to mom tonight. The chest tube remains in place as there was still more drainage. The doctor said that hopefully tomorrow it will come out.

I asked her about eating, and she said that she's been trying some type of nutrition drink today and that's been working out better. She's going to ask if it's available in the grocery store. I'm guessing it must be Ensure or something similar. Anything at this point is better than nothing at all.

I did manage to get her to laugh tonight. I went out with Nate for a little while in the car, and forgot to bring his pacifier. (I know he's too old, but we pick our battles......) Anyway our name for it is the "paci," so when he asked for it tonight, I told him that I didn't have one. He said, "Daddy go home and get me a paci or you're fired!" And once I didn't turn around he just said, "Daddy, you're fired!" I'm not sure where he got that from, but it was pretty comical, and he was lots of entertainment for people in line at the post office...........