Intracranial Brain Bleed

[Rachael2014]

**I THINK I POSTED IN WRONG COMMUNITY, I POSTED UNDER BRAIN INJURIES YESTERDAY** THIS IS SAME POST, SORRY FOR MISTAKE. I apologize in advance if I'm doing this wrong. I've never posted on a site. My 81yr old Dad suffered a massive brain bleed on Tues of last week (one week today). He is in a coma although he opened one eye (the right one) but not on command. He fails all neurological tests except he withdraws to pain. Drs keep telling me NO HOPE for any type of recovery. Yesterday I was called in and told they are having trouble keeping blood pressure up yet heart rate is very high. Drs said its either due to infection or kidney failure. A central line was put in to give meds called Pressers to raise blood pressure, lots of fluids for heart?, antibiotics in case of infection. Today first round of cultures came back positive for pneumonia. It will take several days to know exactly what type of pneumonia. Drs really struggling to keep bp up with presser meds but those meds increase heart rate. I've been pressured each day to stop support ie. help with breathing..he's intubated but IS initiating the breathing..the machine is NOT supporting him 100%. I don't know if he can hear me but I'm told they think he can hear so I talk to him a lot. I try to get any type of response like a hand squeeze, move toes, blink, etc but there's nothing..yet. He was in a nursing home when this happened due to a severe stroke in May 2013 which he wasn't supposed to survive. He lost the ability to walk, talk, eat, etc. Yet gained everything back except walking. He was doing great..then this happened. Has anyone been told by Drs no chance to survive and pressured into stopping support?  He has written instructions that he wants CPR but they even want me to rescind that too. My Dad is all I have. Maybe I'm being naive? But I believe that God can do anything and don't like the pressure to stop support. I've been there every day. Also feeling guilty if I don't go one day..I've let everything go to be there ie. work, chores etc and its catching up with me. Hoping someone can help me with guilt and Drs being so confident of NO recovery. Thank you. And to the people who's stories I've read I pray you all had or have positive outcomes. Thank you.

[Rachael2014]

I just wanted to say thank you to Flipper336 & Retz62. I desperately came here looking for help and information, and was met with such compassion that really helped. Thank you retz62 (Karyn) for all of your personal emails, prayers, & support. I'm praying for everyone who may be going through not only this type of situation, but for all situations involving a loved one. God bless all of you and may God give you all strength to get through these difficult times. Never give up hope, keep praying, and take time to care for yourself, your loved one would want that, just as you would for them. Continued support and prayers for all.. Rachael.

[michniak]

Rachael, how's it going today?  I sent you a message through email.  How's your Dad?  What are the doctor's saying?

[Rachael2014]

Thank you for being so understanding & for your prayers..it means a lot. You said it perfectly, they see this daily & become so used it. I'm so sorry that you went thru this & I pray you get justice for your Mom due to any wrondoing with medicine, that's inexusable! I had the really bad Dr. last week, this weeks Dr is better BUT is putting too much pressure on me. Today is 9 days since my Dads been there. I believe I posted that I meet with this Dr & his staff daily. Today was the worst meeting. I walked in too see staff shaving my Dad..which I was so happy to see, not sure why but I was (he always hated not being clean shaven). His BP & heart rate were perfect & his lungs are much clearer since the meds are working for the staph/pneumonia. The Nurses said he was very comfortable etc. Then the *team* showed up & brought me into that tiny meeting room which I've come to despise. I was abruptly told it's time to take the tube out of his mouth used to assist in breathing & keeping airway open as after a certain amount of time they damage the trachea & a tracheotomy & a PEG needs to be done. I didn't know what PEG meant but its a feeding tube thru stomach (I know you know all this, all new to me). THEN they all say how they don't recommend it & I should just STOP EVERYTHING, & let him essentially pass away. I know both you and Flipper above agreed with Drs because there was no hope. I was given until noon tomorrow to decide. I could barely drive home and I'm a wreck. I feel its only been 9 days..I feel I'm giving up too soon..how does anyone make this decision. I give you both and everyone else SO much credit for being si strong..I'm just amazed at your strength. I'm hoping you or others could tell me if you think its wrong of me to want to at least give my Dad a month..not 9 days..he's made progress in getting thru two major problems but no change neurologically. They are really against me, that's making it so much worse,  I wish they weren't so pushy & making me feel like a horrible person. They told me to *sleep on it* & go back at noon...really? Sure..ill sleep great.. Am I wrong for wanting to wait just another 3wks approx & do the tracheotomy (spelling?)..? I'm a mess as I know you were and can relate..I've put this in God's hands but now have to make a decision. Ps. It's their attitude & pressure that really hurts, I wasn't just given a choice, I was given a 2+ hour speech how wrong I am if I don't do what they recommend. Thank you so much..Rachael.

[michniak]

Rachael, I'm sorry you have to deal with rude doctors at a time like this, ugggh.  Unfortunately they see this stuff every day and it's a daily routine for them, but that doesn't give them to the right to be nasty... I'm sorry.  I did have that kind of treatment, but perhaps because we were in the top trauma brain unit, top notch, so we had some superb doctors and nurses taking care of and evaluating my Mom.  I have a HUGE issue with the doctor who put her on this medicine that we thinking ultimately lead to her death.. I am filing a lawsuit against him, but yes at times he was an arrogant jerk and it breaks my heart that he treated my mother with disrespect at times.

I hope your Dad is hanging in there.  Sending lots of prayers and hugs!

[Rachael2014]

Hi Karyn, thank you so much. I'm sorry so late. Yesterday I was in 3hr meeting with Dr.s, then stayed with my Dad. It's so hard absorbing all the medical info even though I write it all down. Besides the pneumonia he now also has a staph infection in his lungs. I thought staph infections were hospital acquired but Dr's say no? & he could've had at nursing home (where he has been living for over a year doing great). I don't agree with them but you can't argue with Dr's..these Dr's at least. They have me meet with them daily now. I'm so lost, confused, etc as you unfortunately understand. I'm so grateful for finding this forum. I don't know if I already wrote this but my Dad is not reliant on the ventilator, he's initiating his breathing. They say its to help him keep the airway open? Again..confusing. I think its worse when you're going thru it alone. All I can ask is for continued prayers..FLIPPER thank you again also. I will update as things change. So far today no change for better or worse. But battling the pneumonia & Staph infections is making things more complicated. Oh..they also said his kidneys were affected by the low BP on Mon..? When I asked how damaged the reply was *Well he's not on dialysis*. Did any of you deal with what seems at times very uncompassionate Drs & staff? It makes it harder. I seem to get a vibe also if I can't make a meeting due to work, life etc..as they leave at 4pm daily. I've put all my faith in God. I can't thank you both enough for your messages. It really helps. Talk soon..Rachael

[michniak]

thinking of you Rachael.. it's so very hard and will be the hardest decision you will ever have to make.  Sending your prayers and hugs... keep us updated and please know we are here for you.. I am here for you and totally understand your pain :(

Karyn

[Rachael2014]

Hi flipper336, thank you so much. I'm very sorry about your Grandfather, & thank you for sharing your story. I am absolutely going to do that. I just got called by Hospital to come in. I don't mean to rush. I will post as soon as I return. Thank you all...

[flipper336]

First off, I would like to say that I am sorry for what you are going through. I know it is not easy and very stressful. My grandfather was in a car accident and suffered massive brain damage and we had to make the same choice that you are facing now.

After emergency surgery the doctors told us that there was nothing they could do and he would never come out of the coma. He was still breathing on his own but that was all he could do. We made our decision based on the quality of life that he would of had. We knew that even if he did pull through by some miracle he would of never of been the same and would of needed around the clock care. We knew my grandfather would of never of wanted to live in a vegetative state because that is not really living. It was hard but we decided that we would just leave it up to him and god to decide when it was time and stopped all treatment. He was with us for only 2 days after that.

I am sorry to say but it is all up to you. But I would like for you to think about the quality of life he would have and what his wishes would truly be.

[Rachael2014]

Hi retz62, I hope this is the way I reply to you? Thank you so much for taking the time to post about your Mom's experience to help me. I'm so sorry about your Mom's recent passing and pray you and your family are doing better, if it ever gets easier.. You're right, this is the hardest thing I've ever dealt with. I don't have any other family, its always been just me and my Dad for a long time. Thank you for making very good points. Please know you're in my prayers to be strong. I'm so sorry. Rachael

[michniak]

I am really sorry about your Dad.  My 80yo Mom had a massive brainstem stroke on 10/7/14... and we were given no hope as well.  She was awake for a little bit, but was paralyzed on her right side and was having trouble speaking... it was horrible to see.  She fell asleep we thought, but she was actually falling into a coma. She was breathing on her own and her vitals were good... however we were told she would never wake up.  We sat there for three days while different neurologists came in and evaluated her... each said the same thing.. no hope.

We had the option of keeping my mother in that state and putting in a feeding tube.  We decided against it.  Our mother was an active independent lady... she would not want to be laid up unconscious with a feeding tube, not being able to see or talk to her children.. being poked and prodded and lights shine in her eyes every hour :(  We chose to take her home and she died 5 days later.

It is the most horrible thing I have ever had to do was to let my Mom go.. but she would not have wanted to live paralyzed and unconscious.  ... and if she did even wake up which they said was 99% impossible, what kind of life would she have had?  In a nursing home.. not being able to walk or talk... at 80yo, she deserved a better life.

I am so sorry.  This is the most difficult thing you will ever have to deal with.. I don't have any answers for you... but the decision for us came clear when we asked the one questions... "how would Mom want to live?  Would she want us to keep her on life support, and go to a nursing home with bed sores,etc and her kids having to run back and forth and in pain to see her like that?".. that is not what she would have wanted for herself or for us.. so we chose to bring her home where she slept in her own home and died with her 4 kids around her holding her hands.

I'm so sorry.. I hope you find some answers.. my prayers are with you.