They say everything is shutting down

[pelagia]

Paula and Roxanne, you are blessed to have a wonderful, supportive family.  I will continue to hold you all in my thoughts and prayers. 

[Roxanne610]

Hello everyone,,,,
Thank you so much for your support,,,I know there is not much to say I wish there was....My brother, Me and my mom are on like no sleep for the last two days we will not leave him, we are sleeping here at the hospital with him, the weird thing is we have energy, its amazing how the body works...

The liver doctor feels that his time is coming to an end,,,he is too weak to fight this hepatitis C disease,,,it has emaciated him guys,,,to give an analogy its like having aids thats how sick he looks,,or terminal cancer DISGUSTING TO SEE HIM LIKE THIS.  If I had my wish I would switch with him give him my life,, I have had a good life, healthy, fulfilled and great parents I would want him to live healthy and enjoy life the way he should have he was cheated out of life being sick since he was so young and to have this be the end result is sad.  

We have to make a decision with dialysis,,should we put him through this if it doesn't matter, is what were faced with right now...They are extracting fluids they feel the fluid in his stomach is infected.  So now he has pneumonia, staph, and this infection that they cant extract any fluid to test it cause its too risky with the platlets at 50.  We had a hard time in dialysis today when they just took the needles out it took awhile for him to stop bleeding, and he was in pain today just laying there its becoming too much for him to lay there since he is skin and bones, he was in pain them just putting pressure on the area where he got the needles.

Were gonna see what the nephrologist says tomorrow he is gonna have a talk with us, what I would like to do is see what happens when they take the fluids out the infections go away and see if he is in any better shape.  If the liver failure is doing this then of course we would rather him not die from liver failure which is a horrible death anyway you look at its a horrible death..

Keep you all posted....Again ,,,Thanks for all your kind words...
 

[jessup]

 

[pelagia]

Roxanne, first off I am sending many hugs because you surely need many right now.  My grandmother died of liver cancer.  It was twenty years ago, but what I think I remember is that as her liver failed, her pain went down.  I have always thought it was because the body essentially narcotizes itself because it cannot clear toxins.  Someone who has better medical experience should weigh in on that.  I know you do not want your dad to be in pain and I know that this is a very difficult time.  I will keep you in my thoughts and prayers.  Linda  

[rose1999]

Roxanne I feel for you, my husband died from cancer and I know how very hard it is to see someone you love suffering terrible pain.  Morphine tablets and patches didn't work and they eventually gave him a morphine pump which meant he was not in pain as long as he wasn't moved, but it did seem that despite the fact we are told "no-one needs to be in pain" it is very hard to overcome totally.  Perhaps they could try a pump for your Dad?

I pray that your Dad will recover from this, my own Dad has been close to death several times (I can't count the times we have had to travel 90 minutes to the hospital after they sent for us to come quickly) but has come back when it seemed impossible. Never give up hope.

Your neph will advise on whether dialysis is worthwhile and I hope he says it will help - in the meantime all you can do is be there for your Dad, stay strong for your Mum, love one another and pray that he gets through this.

We are all here for you and I  hope that having this forum to pour out your deepest and darkest fears will help a little.

Sending you love to help support you at this heartbreaking time. 

[RichardMEL]

Dear Roxanne... you know we all are here for you... as much as we can be. 

As I said to you in msn earlier while you all struggle with decisions and dealing with this don't forget to include the most important person of all in this process.. Your Dad. Ask him what HE wants and how he feels about it (I know he feels lousy...). Remember that ultimately it is his decision and while it may be heartbreaking for you whatever he does decide your support is what he needs most of all now... because you're giving all you can .. and more.

You have my number if you need me to call .. just let me know   

To Paula, thank you for your very passionate support of Roxanne and the entire family. I think those of us who have "known" Roxanne for a relatively little time sure know how much she loves and supports her family and specially her father. She's indeed a very special and wonderful person who I've spoken with a little bit online and am pleased to get to know her.. Well not under these stressful circumstances of course but this is where we are.

I join everyone here at IHD in sending our prayers and love to Roxanne and support for her dad, mom and brother at this very difficult time. Best wishes there can be some sort of miracle and he can get through this!

 

[kitkatz]

Love and hugs and prayers for you all! 

[Sluff]

The important thing to remember is to keep your Dad as comfortable as possible. It is important for your Dad to make his own decision, and what ever that decision is he needs to feel like he has all the support of his family. If you are preparing for the worst, make sure you tell him it is OK to die, and let him know you will miss him terribly, because he was the best Dad in the world. Then just being there is enough. If this is where things are at then it is important to communicate with him. When my Dad passed away it seemed like he just kept holding on despite the pain until I reassured him that I would watch over my mom. This is a hard thing to talk about, but it may be the time to be thinking along this route. Have they discussed hospice care yet? If I am thinking too fast for you please except my apology, I just know you would want to know the right thing to say and do.

[kidney4traci]

Paula thank you for the thoughts on your family.  You all are blessed to have some many loving people to surround yourselves with.  May you feel the peace of God knowing He is with you always. 

[RichardMEL]

Sluff... I thought that was a great post you made with some important points.

Roxanne I hope you're doing OK... our thoughts are with you! 

[nursewratchet]

Roxanne, I hope I am not nagging, but I URGE to get some help from Hospice.  the knowledge from pain management alone will be invaluable, it's the specialty of Hospice.  Ask your Dad what he wants to do,  talk to him, and assure him that you will be OK.  Make him know that you will help take care of the rest of the family.  He will need permission from you, and the family to die.  Let's all hope and pray that this is not what is happening, but if it is, you need to help him to "be OK" with it, even though it will be the hardest thing you ever do.  He will have a very hard time of it, if he is worried about you and the rest of the family.  It will be a gift you will always be gald you could give him, and it will help him tremendously.  You are a strong person, and even though you don't feel like it now, he needs this from you.  If it is not time for him to die, and he recovers, then he will just see how strong and capable you are.  This is hard.  I wish I could be with you and help you, and I can't of course, so I am telling you what I would tell you if I were taking care of him.  Talk to him until his last breath, even if he doesn't respond.  He'll hear you.  I'm sorry if I'm to forward, but we have to do this.   

[G-Ma]

First of all do exactly what your dad wants you to do.  I and my sons (his stepsons) sat with my husband for 3 days in the hospital after he could no longer speak and was on morphine everytime he showed  pain.  The first 2 days the boys took turns holding him in their laps, cuddling him and I constantly talked to him and the third day I put my head beside his on the pillow and told him it's ok to go on and be at peace and 30 min before his last breath he opened his eyes, looked at the left corner of the room in front of him and "demanded" you take care of her, inhaled and died. I firmly believe he was talking to angels sitting with us and my son and daughter in law believe he was talking to them and it hurt like hell but we did exactly as he wanted which was to let him go and that gave us more peace than anything.  Please please talk to hospice.  They can also help all of you so much.
Ann

[Roxanne610]

Hello Everyone,,,

Thanks for the support right now, Today the neph told us he feels the peritonitis in his stomach is coming from a tear in his smal bowel due to the bacteria culture..Everything is breaking down...He doesnt eat...if he does its very very little a couple mouth fulls...We asked him what he wants to do tomorrow with dialysis,,he said he doesnt wanna go the neph and us told him thats ok you just rest and we will see if your up to your Monday session.  I think we are both playing a game he knows an doesnt wanna verbalize it and we know and we dont either...THIS IS THE HARDEST THINGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGG,,,I JUST WANNA SCREAM AND JUMP OUT OF MY SKIN....I CANT HANDLE HIM KNOWING HE IS DYING HE THINKS IM SURE ITS JUST THE BLOOD INFECTION THAT IS SERIOUS AND THE PNEMONIA,,HE HASNT ASKED ANYTHING REALLY...SO WHO KNOWS WHAT HE IS THINKING ONLY HE DOES...We will just take it day by day it is too much to bare to think any other way and as long as he has the will to fight we will too but we will make sure on thing that is for sure is that WE WILL NOT BE SELFISH AND MAKE HIM SUFFER...We love him too much to do that,,he has suffered and has been sick with this for too long...My cousin who is a dr is coming down from pennsylvania and he will be able to give his dr opinion plus love that he has for his Uncle Steve and help us through all these decisions..

Right now we are just here for him he doesnt wanna talk or be touched he closes his eyes and makes belive his is sleeping so we wont bother him right now just be there and let him know we are here...I know how I feel and I cant imagine how he feels and how scared he must be...Im sure he feels and knows but right now we are not verbalizing to each other

We spoke about hospice the neph suggested it and guys im not insulted please dont feel that way,, I appreciate all your help and I to wish we were all closer.....my mom had a hard time with it and said no I will take care of him and I said mom we will be right there with you and we will take care of him,,, but I think it is good idea we get a hospice nurse to help us through this horrific time..She will help manage his pain amd I heard she will offer us emotional support..So we are going to do that if he gets to come home...

Will keep you posted its a day by day thing,,we are staying here every day and every nite and will be right by his side everystep of the way....

xoxoxoxoxoxo

[okarol]

  Sorry it's so painful Roxanne, when we love someone there's just no easy way out.

[Sluff]

 

[G-Ma]

       

[jessup]

Lots of love and best wishes to all mate
 
Stay strong
 

[charee]

 

[nursewratchet]

Roxanne,  Hospice can come to the hospital as well.  If he needs to stay there, they can help him there.  If ya'll want him home, they can get him there, and take care of him at home.  They will probably have an incenter hospice, that would be much more family freindly than the hospital.  Talk to them and see what your Dad wants.  He may want to go home.  Your doing better than you think you are. 

[pelagia]

  You need to stay strong for your dad and your mom and you are doing a great job of that.  I hope that somehow through all of this you will also find a few moments to breathe deeply and maybe get some sunshine if you can.  That would probably be good for your mom, too. These are very difficult times for your family. 

[kitkatz]

 

[willieandwinnie]

  To you and your family Roxanne. 

[Roxanne610]

Hello,,
I just wanted to check in I have been sick with a virus siince Friday...Throwing up  ..............They gave dad a pump with pain meds of diludid...He can get them every 1/2 hour... He is trying to fight this which makes it so sad...Despite what the doctors say we are gonna keep fighting with him and maybe by a miracle we can beat it I know not forever but at least so we can have him for a little longer...   Its his birthday on the 22nd he will be 66....

Tomorrow were gonna hope to get dialysis what were gonna try is to give him pain meds periodictly through it so he is comfortable ,,we want some fluids to go away...and scared if we stop and something happens so we will see tomorrow if he is not up to it then at that point we will have to see what were gonna do..

I will keep everyone posted any thoughts let us know
xoxoxo

[Sluff]

Thanks for the update Roxanne. You Rox. 

[lola]