Well, I was wondering about this whole rehab thing, but it seemed like the signs pointed in a positive direction, but I guess within the last couple of days, the progress was temporary. As of last night, Mom is getting a higher level of oxygen than was previously necessary, and now we're starting to talk about hospice care rather than rehab.
I've already spoken with Dr. Hunsicker and Jennifer today, and they'll be looking more into this option later today. It just sounds like the only things left would be under the category of "heroic efforts" and Mom made it clear to me last year that she wanted to fight the good fight, but not be resussitated, on the vent, etc. I'm sure they'll be more news later today..........
Friday, October 19, 2007
Thursday, October 18, 2007
Ugly Betty
That's nothing against Mom, it's just what she was watching tonight on TV! It's hard to come up with snappy titles for these posts, so I do what I can..............
I talked to her for a few minutes, but I didn't catch her at a good time. She was not in a good position to talk and tried to get repositioned and couldn't catch her breath. She told me to call back in ten minutes, and I did, but she didn't sound a whole lot better. I talked to her for a few minutes more, but she was tired and let me go. She knows there's talk of transferring to the rehab, and I tried to reassure her that it would be good, and that if anything went wrong, they could get her back to the hospital ASAP. We'll see how she's doing this weekend, but my guess is that they won't try to move her until next week anyway.
I talked to her for a few minutes, but I didn't catch her at a good time. She was not in a good position to talk and tried to get repositioned and couldn't catch her breath. She told me to call back in ten minutes, and I did, but she didn't sound a whole lot better. I talked to her for a few minutes more, but she was tired and let me go. She knows there's talk of transferring to the rehab, and I tried to reassure her that it would be good, and that if anything went wrong, they could get her back to the hospital ASAP. We'll see how she's doing this weekend, but my guess is that they won't try to move her until next week anyway.
Rehab
Bill called me last night after arriving home, and he said that Mom had another decent day. She slept quite a bit, but was comfortable and able to manage pain well. She's not strong enough to be discharged, but she's at a point where the care of the hospital is really more than necessary, so Dr. Hunsicker is talking about having her go to a rehab facility for a while.
The case manager is going to be checking on available bed status today, and will be contacting my Mom's insurance carrier to see what's covered. I'm guessing that even if her medical insurance doesn't cover it, the cancer insurance she purchased from AFLAC might, so we'll have to check into all the angles. Speaking of which, if you ever have the opportunity to sign up for cancer insurance at work, do it. Mom paid just a couple dollars per pay for it, and it's paid out thousands already. It's a good thing that little voice told her to go for it because I'm sure this experience would have been much different without it.
The case manager is going to be checking on available bed status today, and will be contacting my Mom's insurance carrier to see what's covered. I'm guessing that even if her medical insurance doesn't cover it, the cancer insurance she purchased from AFLAC might, so we'll have to check into all the angles. Speaking of which, if you ever have the opportunity to sign up for cancer insurance at work, do it. Mom paid just a couple dollars per pay for it, and it's paid out thousands already. It's a good thing that little voice told her to go for it because I'm sure this experience would have been much different without it.
Wednesday, October 17, 2007
Update from Bill
As I mentioned previously, Mom's brother Bill and his wife Kathryn made the trip up to the valley yesterday. They'll be spending more time with Mom today before heading back down, and Bill said that he may try to make it back up to the valley this weekend.
He was able to get a wealth of information from the surgeon that placed the chest tube and the nurses on duty. The surgeon actually came to remove the chest tube from her right side. He said that the Pleurodesis seemed to do its job, and the amount of fluid being drained was minimal. He explained to Bill that there were two "pockets" of fluid that had collected, and they were evidently not connected which is why the chest tube had to be moved initially. (Still seems a little funny to me, but you can only know so much without performing some kind of invasive surgery........)
There is still some talk of putting the chest tube on the right side, but the amount of fluid there isn't at a dangerous level, so he's going to let her go without for a few days and re-evaluate the situation then.
The nurses communicated to Bill that Mom had been using morphine less and less frequently. She didn't need it at all yesterday, opting for a more moderate pain reliever. (Still more than the Excedrin in my desk drawer, but not like morphine.)
Bill said that she seemed very lucid and was able to have a substantial conversation. He said that there were quite the antics going on in the next bed, but Mom seemed to sleep through it anyway. I guess they had an overabundance of visitors, and even had a birthday party for a five year old girl in there! (Hello? These rooms are about 12' x 20' with two hospital beds and all the equipment around them.) Bill said that he avoided the confrontation and bit his tongue because it didn't seem to phase Mom.
There's evidently been some talk of moving Mom to the physical therapy center behind the hospital, but that wouldn't happen until they get the whole chest tube situation under control. The surgeon confirmed for Bill that they're not just going to kick Mom to the curb at some point if she's unable to care for herself at home, and if there's not some type of medical assistance available. I guess we'll find out more in the coming days, but for now, she still requires a substantial amount of care, and isn't going anywhere.
He was able to get a wealth of information from the surgeon that placed the chest tube and the nurses on duty. The surgeon actually came to remove the chest tube from her right side. He said that the Pleurodesis seemed to do its job, and the amount of fluid being drained was minimal. He explained to Bill that there were two "pockets" of fluid that had collected, and they were evidently not connected which is why the chest tube had to be moved initially. (Still seems a little funny to me, but you can only know so much without performing some kind of invasive surgery........)
There is still some talk of putting the chest tube on the right side, but the amount of fluid there isn't at a dangerous level, so he's going to let her go without for a few days and re-evaluate the situation then.
The nurses communicated to Bill that Mom had been using morphine less and less frequently. She didn't need it at all yesterday, opting for a more moderate pain reliever. (Still more than the Excedrin in my desk drawer, but not like morphine.)
Bill said that she seemed very lucid and was able to have a substantial conversation. He said that there were quite the antics going on in the next bed, but Mom seemed to sleep through it anyway. I guess they had an overabundance of visitors, and even had a birthday party for a five year old girl in there! (Hello? These rooms are about 12' x 20' with two hospital beds and all the equipment around them.) Bill said that he avoided the confrontation and bit his tongue because it didn't seem to phase Mom.
There's evidently been some talk of moving Mom to the physical therapy center behind the hospital, but that wouldn't happen until they get the whole chest tube situation under control. The surgeon confirmed for Bill that they're not just going to kick Mom to the curb at some point if she's unable to care for herself at home, and if there's not some type of medical assistance available. I guess we'll find out more in the coming days, but for now, she still requires a substantial amount of care, and isn't going anywhere.
Tuesday, October 16, 2007
No Update from Last Night
Well, I called the nurse's desk last night, but she was tied up with a patient and asked me to call back. It was getting pretty late, so I figured with Bill driving up today that he would likely get the latest on Mom's condition and call me later tonight or tomorrow.
Monday, October 15, 2007
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.
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.
Saturday, October 13, 2007
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.
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.
Friday, October 12, 2007
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.
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.
Wednesday, October 10, 2007
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.
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.
Tuesday, October 09, 2007
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.
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.
Sunday, October 07, 2007
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.
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.
Saturday, October 06, 2007
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.
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