cirrhosis, end stage kidney disease, congestive heart failure, etc

My dad has been going down hill for years and has now been in icu on a ventillator for 5 weeks. His kidneys are functioning at 6-7%, he has cirrhosis though not sure the stage, he has congestive heart failure and has a pacemaker and defibrillator from previous cardiac arrest. He has also had a triple bypass and is diabetic. He has slipped in and out of deep sleep that last for days though now is awake quite a bit comparatively. He now has a tracheotomy for the ventillator and feed bag. They say he is not a candidate for dialysis but they can't wean him off the ventillator because he is too week to breath on his own. He has been on antibiotics for 5 weeks now for pneumonia, 3 staph infections, sinus infections and infection in the fluid in his stomach. He has gastritis also. He is constantly being given blood transfusions, plasma and platelets. How long could this go on? My mom is a mess staying with him at this point. Sorry for the lengthy detail. I'm sure I left out a lot but you get the gist. Anyone that has gone through this craziness I would love input from. Thanks in advance.

Daughter,

I'm so sorry your dad is going through this, it's so difficult for the family too. If your mom is a "mess", maybe you could get a member of the clergy, or a counselor at the hospital to talk with her. They can often help to make these things a bit easier.

Sometimes it's just a matter of having another family take over the vigil that it sounds like your mom is keeping. She needs a break, and I'm sure you all could use one.

As far as how long this could go on, take the doctor aside and ask point-blank so you can better prepare yourselves.

Do keep us updated, and try to get some rest.

Hugs,
Mae

I agree. Its so important that medical wishes are in writing before this type of an event happened. They new verbally what each other wanted by when presented with the situation its really hard to give up when nothing is in writing:( I spent the 1st 2 weeks there and had to go home because I have 2 little ones and live far away. My sister spent the next to weeks there and had to go home because she has a little one and lives far away. Now its just mom there. When I was there I was asking questions and learning things that did not sound good. Nobody told my mom these things and she doesn't ask. He hasn't been able to talk so input from him is hard. Slowly they have learned that he just wants to go home. But they say at this point he wouldnt make it home. Mom says the goal is to get him strong enough to make the 2 hour ambulance ride home to die. I dont see how he is going to get strong enough for that. He ended another round of antibiotics yesterday only to spike another fever last night so is now down and out and sleeping all the time again. They havent determined the cause yet. I want to go back to see him this weekend but dont know that I would be any help. He wont let my mom leave his side and gets upset if she does. Plus no kids allowed in his room. I felt so in the loop to talk to the doctors while I was there the first time and who to talk to about what but this is a whole new facility and I feel like I would be starting from scratch. I guess I could do it. Was just hoping that nature may take its course and things would happen naturally to make the decision for everyone. If he moves off the vent he will only last probably a few hours. Pulling the plug on a coherent person is tough. Seems odd that he gets infection after infection when he is constantly on antibiotics! Thanks for your feedback. I guess I will just plan on going back this weekend and seeing what I can find out on my own.

D sorry to hear about your father's condition. I have been in this place with my partner Mike. It is hard when they are coherent and understand everything. Sometimes a person can become fearful. I know that Mike had some of those moments. Mike was coherent to the last minute of his life. He had a DNR in place which meant that he didn't have all the things going on that your dad does. 24 hours into the situation when he was going to be intubated etc... the DNR went into effect. He died about 24 hours after he went in.

I know that having time to say good-bye was important for him and for me. I also know that having his wishes followed was important for him. Neither he nor I were ready for the quickness in which his last moment came but there is a peace that his wishes were followed.

Take it one step at a time and do what is best for your mom and dad. She has to find some time away or it will affect her health also. You and your sister are in the same boat. It would be nice if a way could be found to transport him home.

My thoughts and prayers are with you and your family in these tough times.

Sandia

I loved the comments and suggestions. I want to move more things from home into his room. Thought that that was a great idea. Mom says she has stuff there to remind him of home but he doesn't see it. He does look at pictures so I will bring more of that. They still have located the source of the new fever but he set to stop trying and stop poking on him. He is refusing the insulin drip to offset the antibiotics that are making his sugar levels sky rocket. His blood pressure is remaing very low. I think 90/34. They can't give him more water because he swelling too fast. He agreed to stay on the ventillator until I get there. Hope he is not in a diabetic coma before I make it:( the doctors did finally tell my mom to call in family. This is so hard. It is definitely his time to go. Lesson to all to get your directives in order before it's too late. I will leave tonight or first thing in the morning. Thanks for all your responses. It's so good to have advise and input in this type of situation;(

D2: Would they let you bring his bedspread? Visit with the dog/cat? Some places are more lenient, especially his hospice areas. I am glad you are going down there. Hugs to you and your whole family.

Mama Lama

Those are great ideas! Thanks. He hasn't been awake today so hopefully he will wake again tomorrow. They are deactivating his defibulator tonight:( hoping all goes as best as possible

Dad passed away this morning at 6am. We talked the doctors in to letting him come home. They said he wouldn't make the trip over and over but we finally got everything in order to bring him home. He was wide awake when he got here which we were all happy about. Hospice came in right after. He was very close to death at this time. He had a very scary sounding gurgle in his throat the next day and he slept most of the day without opening his eyes but a couple times for a second. We held hands with him all day and talked. The doctor came the next day to take him off the ventillator. It was the hardest day of my life. He was very medicated at this point and at total peace. His oxygen dropped quickly and so did his heart rate as we cried. Then after a little bit of time passed we all started sharing fun memories around his bed. His pulse went back to normal. His oxygen level went up to 88 and he breathed on his own for 13 hours! This is way more time than any doctor expected. We think he was enjoying all the stories:). I will miss him a ton but he was in so much pain it was hard to watch and I know he is in a better place. Thanks again for all the support and the best to you all!

So sorry for your loss. I am happy to hear that he was able to come home and enjoy his last few days together. My condolences to you and your family.

You did all of the right things. Be well.

D2. How wonderful that you were able to bring him home. That helps the transition greatly. My thoughts and prayers are with you and your family!!

Sandia