Has anyone heard from Hopper52?

Update and advice for Hopper52
Thank you so much for your care and concern. We've had an intense and emotional last few weeks, so we have failed to keep you all updated on Dad's progress. We have had MANY complications in the past two weeks and honestly, it's almost put the cancer at the lower end of our concerns. A few days after dad went home, he noticed much more pain and swelling in the abdomen. On that first Friday home, his sutures opened, pouring at the least 2000cc of fluid from the ascites. We personally decided to rush him to the emergency room, and were VERY disappointed in hospice's lack of alertness and reaction to the situation in which they didn't urge this at all, but rather suggested we wait until Monday for a nurse to come out and drain it. Once at the emergency room, the doctors took one look at him and immediately took him into the ER where he went into surgery that lasted through the night. He had developed septicemia (we worried all week that he had an infection, but were waiting for hospice to finish the lab work to confirm) and his heart rate was extremely low (perhaps related to a completely clogged artery which they discovered), and his bowel was still obstructed. The doctors did the best they could, but ultimately painted a grim picture of dad's chance at surviving through yet another surgery. But, if you know Mike, you know he's a fighter and perhaps has the toughest body we've ever seen. He made it through the surgery and has since, every day, surprised the nurses and doctors with his progress. He has the G tube to drain his stomach and has a wound vac from the surgery (they had noticed and repaired a disconnection between the stomach and intestine, and the wound vac is amazing because it will keep him from getting an infection, unlike the surgery he received at Moffitt). So now he has been at Brandon Regional Hospital for two weeks and we have yet to concretize a release date. Because of the wound vac, we are unsure when he will be able to come home and some nurses and hospice are talking about a hospice assisted living facility where the staff would be able to manage the wound vac.

Through all of this, we can tell dad is very depressed, but he lights up when he hears us laugh or just talk about random stupid things. His eyes still have some spark in them. We are all trying to keep hope through all of this but it is beyond exhausting. We are wondering if ANYONE can give us some information/advice on these problems:
ASCITES: from our research, the ascites is quite common in cancer patients but we find little information on ways to address it. We are very concerned about this condition and are not sure what to expect. It isn't something the doctors have directly addressed yet, which is surprising because it is a very serious problem, especially with how quickly it can build up.
WOUND VAC: if anyone has had experience with not being in the hospital while with a wound vac, we would like to know our options. We have yet to talk to a doctor about this, and are unsure how long he will have it. But our impression is that he will have to be somewhere where they can monitor it, which might impede him coming home.
HOSPICE: we have only heard amazing things about hospice and have heard that our local hospice is fairly broad in scope in how much they will accommodate for their patients. However, we were extremely upset at the lackadaisical attitude of our last nurse (It was about 3 hours until she arrived, and only after calling hospice several times. She was continually making jokes while dad was hunched over in pain due to the infection, and only took the situation seriously when he clocked in a 103+ fever), and their inability to acknowledge the severity of his condition makes us very concerned that they don't comprehend that we are NOT GIVING UP and we do not view this as necessarily end of life treatment. We may have limited curative options, but palliative treatment should still respect the life that is being lived -- emphasis on life rather than end. We know they are very beneficial and helpful compared to trying to do everything ourselves, but we are still so discouraged and would like to ask for better treatment in the future.

Please keep Dad in your prayers and thoughts. We are fighting everyday and know Dad wants to get better, not give in. We've never cheered so much from him passing gas or releasing stool. It has truly brought us closer and we want this closeness to last much longer after he has come home and healed. Wishing the best for you all too!

hopper_daughter3 said:

Update and advice for Hopper52
Thank you so much for your care and concern. We've had an intense and emotional last few weeks, so we have failed to keep you all updated on Dad's progress. We have had MANY complications in the past two weeks and honestly, it's almost put the cancer at the lower end of our concerns. A few days after dad went home, he noticed much more pain and swelling in the abdomen. On that first Friday home, his sutures opened, pouring at the least 2000cc of fluid from the ascites. We personally decided to rush him to the emergency room, and were VERY disappointed in hospice's lack of alertness and reaction to the situation in which they didn't urge this at all, but rather suggested we wait until Monday for a nurse to come out and drain it. Once at the emergency room, the doctors took one look at him and immediately took him into the ER where he went into surgery that lasted through the night. He had developed septicemia (we worried all week that he had an infection, but were waiting for hospice to finish the lab work to confirm) and his heart rate was extremely low (perhaps related to a completely clogged artery which they discovered), and his bowel was still obstructed. The doctors did the best they could, but ultimately painted a grim picture of dad's chance at surviving through yet another surgery. But, if you know Mike, you know he's a fighter and perhaps has the toughest body we've ever seen. He made it through the surgery and has since, every day, surprised the nurses and doctors with his progress. He has the G tube to drain his stomach and has a wound vac from the surgery (they had noticed and repaired a disconnection between the stomach and intestine, and the wound vac is amazing because it will keep him from getting an infection, unlike the surgery he received at Moffitt). So now he has been at Brandon Regional Hospital for two weeks and we have yet to concretize a release date. Because of the wound vac, we are unsure when he will be able to come home and some nurses and hospice are talking about a hospice assisted living facility where the staff would be able to manage the wound vac.

Through all of this, we can tell dad is very depressed, but he lights up when he hears us laugh or just talk about random stupid things. His eyes still have some spark in them. We are all trying to keep hope through all of this but it is beyond exhausting. We are wondering if ANYONE can give us some information/advice on these problems:
ASCITES: from our research, the ascites is quite common in cancer patients but we find little information on ways to address it. We are very concerned about this condition and are not sure what to expect. It isn't something the doctors have directly addressed yet, which is surprising because it is a very serious problem, especially with how quickly it can build up.
WOUND VAC: if anyone has had experience with not being in the hospital while with a wound vac, we would like to know our options. We have yet to talk to a doctor about this, and are unsure how long he will have it. But our impression is that he will have to be somewhere where they can monitor it, which might impede him coming home.
HOSPICE: we have only heard amazing things about hospice and have heard that our local hospice is fairly broad in scope in how much they will accommodate for their patients. However, we were extremely upset at the lackadaisical attitude of our last nurse (It was about 3 hours until she arrived, and only after calling hospice several times. She was continually making jokes while dad was hunched over in pain due to the infection, and only took the situation seriously when he clocked in a 103+ fever), and their inability to acknowledge the severity of his condition makes us very concerned that they don't comprehend that we are NOT GIVING UP and we do not view this as necessarily end of life treatment. We may have limited curative options, but palliative treatment should still respect the life that is being lived -- emphasis on life rather than end. We know they are very beneficial and helpful compared to trying to do everything ourselves, but we are still so discouraged and would like to ask for better treatment in the future.

Please keep Dad in your prayers and thoughts. We are fighting everyday and know Dad wants to get better, not give in. We've never cheered so much from him passing gas or releasing stool. It has truly brought us closer and we want this closeness to last much longer after he has come home and healed. Wishing the best for you all too!

Praying for you all and for Michael every day...
To ALL of Michael's Daughters and family,

We are keeping Michael and you all in our prayers and thoughts daily. I hope the posting of this thread lets you see that in action.

We ALL miss Michael's contributions to the board, his presence, his life and energy he ALWAYS displayed, and his compassion and his VOICE here. We are ALL rooting and pulling for him, right along with you.

I WISH I had any advice on the Ascites or the Wound Vac, or any of those issues. I will hope someone can post some helpful information on those. I have none. I WILL be going to read up and learn now though. I will share ANYTHING I find out.

As for Hospice, I am so sorry you are having that type of experience. It doesn't sound right at all. Having someone making jokes or not taking Michael's recovery seriously makes me see red. I hope this was as ISOLATED event with that particular nurse? If not, I know there are many different agencies, and I hope you will call one of the other agencies and ask them to take over Michael's care at once. I know we were faced with "hiring" hospice and that was to be from the different agencies that could come out. We had to pick which one, they all would kind of come and sell you on their services. We only ended up calling the first one we called, and we are still with them and for the most part have had a good experience. But, we have had NONE of the extreme experiences you all have had! I would expect and hope they are the BEST at being there for you, and handling these types of situations. Bothers me a LOT that they don't seem professional. PLEASE keep us posted when you have the energy on this. I am concerned to say the least. Let ME call their supervisor! I would highly advise you complain to their higher-ups and possibly to the local medical board?? Get some relief!

You will all need your energy to be there and help Michael.
I hope you get some of the answers you are looking for through this board.

May God bless all of you, and keep Michael strong and alive and well.
I will pray for this end. I want him HOME with you just as much.
Please tell Michael we are ALL pulling for him here. We EXPECT him back!
-Eric

hopper_daughter3 said:

Update and advice for Hopper52
Thank you so much for your care and concern. We've had an intense and emotional last few weeks, so we have failed to keep you all updated on Dad's progress. We have had MANY complications in the past two weeks and honestly, it's almost put the cancer at the lower end of our concerns. A few days after dad went home, he noticed much more pain and swelling in the abdomen. On that first Friday home, his sutures opened, pouring at the least 2000cc of fluid from the ascites. We personally decided to rush him to the emergency room, and were VERY disappointed in hospice's lack of alertness and reaction to the situation in which they didn't urge this at all, but rather suggested we wait until Monday for a nurse to come out and drain it. Once at the emergency room, the doctors took one look at him and immediately took him into the ER where he went into surgery that lasted through the night. He had developed septicemia (we worried all week that he had an infection, but were waiting for hospice to finish the lab work to confirm) and his heart rate was extremely low (perhaps related to a completely clogged artery which they discovered), and his bowel was still obstructed. The doctors did the best they could, but ultimately painted a grim picture of dad's chance at surviving through yet another surgery. But, if you know Mike, you know he's a fighter and perhaps has the toughest body we've ever seen. He made it through the surgery and has since, every day, surprised the nurses and doctors with his progress. He has the G tube to drain his stomach and has a wound vac from the surgery (they had noticed and repaired a disconnection between the stomach and intestine, and the wound vac is amazing because it will keep him from getting an infection, unlike the surgery he received at Moffitt). So now he has been at Brandon Regional Hospital for two weeks and we have yet to concretize a release date. Because of the wound vac, we are unsure when he will be able to come home and some nurses and hospice are talking about a hospice assisted living facility where the staff would be able to manage the wound vac.

Through all of this, we can tell dad is very depressed, but he lights up when he hears us laugh or just talk about random stupid things. His eyes still have some spark in them. We are all trying to keep hope through all of this but it is beyond exhausting. We are wondering if ANYONE can give us some information/advice on these problems:
ASCITES: from our research, the ascites is quite common in cancer patients but we find little information on ways to address it. We are very concerned about this condition and are not sure what to expect. It isn't something the doctors have directly addressed yet, which is surprising because it is a very serious problem, especially with how quickly it can build up.
WOUND VAC: if anyone has had experience with not being in the hospital while with a wound vac, we would like to know our options. We have yet to talk to a doctor about this, and are unsure how long he will have it. But our impression is that he will have to be somewhere where they can monitor it, which might impede him coming home.
HOSPICE: we have only heard amazing things about hospice and have heard that our local hospice is fairly broad in scope in how much they will accommodate for their patients. However, we were extremely upset at the lackadaisical attitude of our last nurse (It was about 3 hours until she arrived, and only after calling hospice several times. She was continually making jokes while dad was hunched over in pain due to the infection, and only took the situation seriously when he clocked in a 103+ fever), and their inability to acknowledge the severity of his condition makes us very concerned that they don't comprehend that we are NOT GIVING UP and we do not view this as necessarily end of life treatment. We may have limited curative options, but palliative treatment should still respect the life that is being lived -- emphasis on life rather than end. We know they are very beneficial and helpful compared to trying to do everything ourselves, but we are still so discouraged and would like to ask for better treatment in the future.

Please keep Dad in your prayers and thoughts. We are fighting everyday and know Dad wants to get better, not give in. We've never cheered so much from him passing gas or releasing stool. It has truly brought us closer and we want this closeness to last much longer after he has come home and healed. Wishing the best for you all too!

As Sherri already said,
As Sherri already said, ascites is managed by being drained periodically as your father becomes symptomatic. This is usually not done at home, but with the push for more care at home, that may have changed recently. Unfortunately, this is the only option that I know of.

The wound vac can definitely be cared for at home. I know this for sure. When this is set up with the agency, request a nurse that has been specifically trained in his type of wound vac. If necessary the wound vac company can train you and the home care company/nurse. You can call the manufacturer of the vac and they will help you. More often than not, the reps from these companies are nurses who are uber caring and well trained. You will find a wealth of information from them. Do not hesitate to call . .

Hospice . . . . I did it for years. Waste no time, call the agency, give facts of the situation, tell them that nurse is not welcome back in your home and you would like another nurse when the time is right. Level headed, factual information and a request for different care should be granted. If you are not treated with the utmost respect and dignity DURING that call, thank them for their services, ask them to CLOSE you father's case so that you can move onto another agency. (home care agencies cannot accept a patient if they are 'open' with another company).

Sincerely,
Whitney

hopper_daughter3 said:

Update and advice for Hopper52
Thank you so much for your care and concern. We've had an intense and emotional last few weeks, so we have failed to keep you all updated on Dad's progress. We have had MANY complications in the past two weeks and honestly, it's almost put the cancer at the lower end of our concerns. A few days after dad went home, he noticed much more pain and swelling in the abdomen. On that first Friday home, his sutures opened, pouring at the least 2000cc of fluid from the ascites. We personally decided to rush him to the emergency room, and were VERY disappointed in hospice's lack of alertness and reaction to the situation in which they didn't urge this at all, but rather suggested we wait until Monday for a nurse to come out and drain it. Once at the emergency room, the doctors took one look at him and immediately took him into the ER where he went into surgery that lasted through the night. He had developed septicemia (we worried all week that he had an infection, but were waiting for hospice to finish the lab work to confirm) and his heart rate was extremely low (perhaps related to a completely clogged artery which they discovered), and his bowel was still obstructed. The doctors did the best they could, but ultimately painted a grim picture of dad's chance at surviving through yet another surgery. But, if you know Mike, you know he's a fighter and perhaps has the toughest body we've ever seen. He made it through the surgery and has since, every day, surprised the nurses and doctors with his progress. He has the G tube to drain his stomach and has a wound vac from the surgery (they had noticed and repaired a disconnection between the stomach and intestine, and the wound vac is amazing because it will keep him from getting an infection, unlike the surgery he received at Moffitt). So now he has been at Brandon Regional Hospital for two weeks and we have yet to concretize a release date. Because of the wound vac, we are unsure when he will be able to come home and some nurses and hospice are talking about a hospice assisted living facility where the staff would be able to manage the wound vac.

Through all of this, we can tell dad is very depressed, but he lights up when he hears us laugh or just talk about random stupid things. His eyes still have some spark in them. We are all trying to keep hope through all of this but it is beyond exhausting. We are wondering if ANYONE can give us some information/advice on these problems:
ASCITES: from our research, the ascites is quite common in cancer patients but we find little information on ways to address it. We are very concerned about this condition and are not sure what to expect. It isn't something the doctors have directly addressed yet, which is surprising because it is a very serious problem, especially with how quickly it can build up.
WOUND VAC: if anyone has had experience with not being in the hospital while with a wound vac, we would like to know our options. We have yet to talk to a doctor about this, and are unsure how long he will have it. But our impression is that he will have to be somewhere where they can monitor it, which might impede him coming home.
HOSPICE: we have only heard amazing things about hospice and have heard that our local hospice is fairly broad in scope in how much they will accommodate for their patients. However, we were extremely upset at the lackadaisical attitude of our last nurse (It was about 3 hours until she arrived, and only after calling hospice several times. She was continually making jokes while dad was hunched over in pain due to the infection, and only took the situation seriously when he clocked in a 103+ fever), and their inability to acknowledge the severity of his condition makes us very concerned that they don't comprehend that we are NOT GIVING UP and we do not view this as necessarily end of life treatment. We may have limited curative options, but palliative treatment should still respect the life that is being lived -- emphasis on life rather than end. We know they are very beneficial and helpful compared to trying to do everything ourselves, but we are still so discouraged and would like to ask for better treatment in the future.

Please keep Dad in your prayers and thoughts. We are fighting everyday and know Dad wants to get better, not give in. We've never cheered so much from him passing gas or releasing stool. It has truly brought us closer and we want this closeness to last much longer after he has come home and healed. Wishing the best for you all too!

Prayers for your Dad and for
Prayers for your Dad and for you all. What a fighter! It is so wonderful you are there with him. He can enjoy your company, and you can enjoy his as well as protect him from people who don't know how to do their job. You Dad has really tugged at our heart strings. We continue to pray for his comfort and for continued time with you. BMG

Thank you and next steps
Thank you so much for your responses, and for the advice and information. We are definitely going to be in touch with hospice about the kind of response Dad received a couple of weeks ago. We're also going to ascertain the kind of care we can expect over the weekend; that's a real concern.

It looks like Dad is going to be released tomorrow to the hospice facility. None of us was at the hospital when the hospice representative came to speak with our parents, but it sounds like the wound vac isn't an option for home *or* the hospice house. They want to change him over to dry dressings and then have him transition at the hospice house to home care -- teaching us how to change the dressings, etc. We are going to contact the wound vac company and really anyone else we can about other options, but it sounds like hospice--or our particular hospice--actually limits what we can do. We are really frustrated about this, especially now that we have less time to explore these other options.

Dad is hanging in there--and still making jokes--but he's very weak and not able to eat much, and we are trying to stay on top of pain management (maybe hospice can come through for us here). We're trying to get his strength up to keep fighting and come home. We'll keep you all posted.

And: you all are amazing. Thank you.

One more update
Thanks, Eric, and all of you. We just found out that Dad can come home with the wound vac! We just weren't saying what we wanted loudly enough -- lesson learned. We'll know more in the morning when we speak with the doctor, the hospital social worker, and hospice, but some amazing nurses listened to us and passed along the message, and Dad will be home soon, which is just what he (and we) want.

More soon. Love and peace to you.