Another brother is in ICU.

[Shirley Ujest]

Back in January, brother #3 entered hospital, had pnuemonia, went on life support. Lungs collapsed. Removed life support and he joined the choir above. He was 43.


Last week, brother #2 went in with pnuemonia, everyone was hopeful - very hopeful that he would recover. He is on a vent to help him breath. He, like #3, has muscular dystrophy. He is not getting better, and he is not getting worse. He cannot stay on a vent for much longer because it messes up the internal organs with long term use. My mom has to make the decision whether or not do a traceotomy. He cannot breath on his own. this decision might have to be made today or tomorrow.

He just turned 48 on Monday. He has no family of his own and no friends.

She is still blaming herself for brother #3 death and I really dread the moment of decision, (notsomuch for my brother but for my mom.)

The doctors were bringing him out of the sedation ( for reasons I am not entirely clear on) and I think they are doing it so that since he is a NO CODE , he will thrash about and try to remove his tubes, thus the medical staff cannot put it back in for him. I could only hope so.

I feel so spectacularly crappy for my mom it is not even fathomable. It's not even 12 weeks since #3's passing.

Everyone, whatever you believe in, pray for God/Whatever to take my brother and spare my mother from this horrid decision.

[Astroboy14]

Shirley Ujest, my prayers, FWIW, are with you and your family...

Please let us know what happens.

[Simetra]

You have my prayer.

I'm sorry.

[Mr. Cynical]

That's really hard, Shirley. God Bless.

[TroubleAgain]

Shirley, I'm so sorry. Once again, my prayers are with you and your whole family. (Isn't brother #1 dealing with the same illness? If so, must be really hard on him, knowing he could face this before too long himself.)

[Spritle]

Originally posted by Shirley Ujest

She is still blaming herself for brother #3 death and I really dread the moment of decision, (notsomuch for my brother but for my mom.)

<snip>

Everyone, whatever you believe in, pray for God/Whatever to take my brother and spare my mother from this horrid decision.


OK everyone, take out your notebooks and jot this down. This is probably the truest expression of love and compassion that you will ever see.

Shirley, I have always that one of the worst injustices in the world is for a parent to bury thier child. This has happened once and will happen again for your mother. I deeply hope that things go as you wish so as to keep the injustices from piling up.

I often read these types of threads, but rarely post in them. I felt compelled to send you some positive energy...

[Spider Woman]

I can't imagine anything more painful than losing a child. Your mother is an amazing woman, that she has had the strength to deal with the effects of this devastating disease on her children , all these years. My thoughts and heart are with you and your family.

[Knighted Vorpal Sword]

My thoughts are with you . . . be strong.

[Serendipity]

Shirley, you and your family are in my prayers. I'm so sorry you have to go through this, especially so shortly after brother #3's passing.

[Equality 7-2521]

Shirley, I'm very sorry to hear about your brothers.

I deal with life support issues in the ICU daily. Feel free to e-mail me and I'd be happy to answer any questions you may have regarding ventilators, sedation of patients on ventilators, and withdrawing life support.

[Persephone]

Oh Shirley, my heart is breaking for you and your family.

((((Shirley))))

If you need anything, let me know. I'm less than an hour away.

Cristi

[Cajun Man]

{{{{{{Shirley & family}}}}}}

[techchick68]

Goodness! Oh, how awful Shirley. I thoughts and prayers are with you and your family. :(

{{{{{SHIRLEY}}}}}

[Verrain]

I wish you all strength, serenity and wisdom for this troubling time. I will keep your family in my prayers.

[Brynda]

Oh, Shirley. This is just so unfair.

Peace be with your brother and your family.

[rocking chair]

oh my, i'm so sorry y'all are dealing with this so soon. you and your family will be in my thoughts and prayers.

[Shirley Ujest]

Thanks for all the kind words and prayers, everyone. It really means a great deal to me.

After consideration and contemplation, my mom (and I) have decided to have my brother have the tracheotomy.(sp?). When he is brought up from the morphine, he shows alot of life (Unlike when brother number 3 was in)and we both decided (on our own before talking about it) that traching him, is an option that we (mom) can live with at this point. That way we can a) say we exhausted all the avenues open to us and b) if he doesn't do well on it, make the decision knowing we did wall we could. He is on "no code", meaning if his heart goes or he yanks out the tubes, the nurses/staff cannot revive him. And after traching him, he can still be a no code. The fact that I know this kind of stuff is really depressing.

Brother #1 also had MD and died from a pnuemonia related heart attack in 1994. My mom was not there for that. There is one more brother (#4, for the numerically impaired :)) who will more than likely be in the situation that all of them have been in in. He is a nurse and I can only hope to God/Whatever he and his wife talk about this stage and the whatifs and what to do's, because I am not dealing with this again. I just want to wake up, get the phone call that so and so died and deal with it that way.

I pray that all of you never ever have to deal with something like this on such a close level.

If my Mom does not have a massive stroke by the end of this (all the boys dying) I, for one, will be impressed. Whn this brother was admitted, the staff did a double take at the man and the chart, because of the resemblance, disease and strange last name. The nurses are wonderful.

(ramble)I am very fortunate that I am able to park my kids at my inlaws house and bunk here (as I am pirating their computer right now) because I am about 8 miles from the hospital as opposed to 45.

The weirdest thing is that my mom and I will sit in Tom's (#2) room with him laying there all hooked up and mom and I will just be chatting away for the longest time until a machine pings or Tom moves. It's like we forget why we are there. It's really a humbling experience. I must say though, we have the best conversations when in ICU units.

that's all for now. Updates as they warrant.

[pepperlandgirl]

I wish I could say or do something to help. I've never been in your position, so I can't even beging to fathom how horrible it must be for you.
My thoughts and prayers are with you.

[dropzone]

Good God, Shirley, you, your mom, and all your family have had enough misery. I hope and pray that things work out as well as they possibly can.

mike

[Milossarian]

Shirley, there's an "SDMB Milk Carton" thread going on this very page, where I mention that I haven't seen you around and I miss you on here.

I now see why you haven't been here so much.

I'm so sorry for what you and your family are going through, and my thoughts and prayers are with you.

[Falcon]

Oh hon.....*hugs*

You and your family are in my thoughts.

[tiggeril]

I only have one brother, and no matter how many times I say I can't stand him, could live without him, etc., I don't think I could go through watching him die. You have my best wishes and my prayers, Shirley.

[evilbeth]

Shirley, I can't believe I almost missed this. I am so truly sorry for the pain your family is going through. You will be in my thoughts and prayers.

{{{Shirley}}}

[Scotticher]

Shirley-

I lost my brother to pancreatic cancer three years ago. I feel so bad for you, to have to go through this pain again and again.

And your mom....it hurts so very much to lose a child, let alone TWO.

You and your family are in my prayers. And in my thoughts, and I am holding you in my heart.

I wish you peace, and love and serenity in the face of this unbearable situation. Hard to come by, I know. I wish there was something more helpful to you that I could do...but I know that there is nothing I can say to make much difference. But I care, and I hurt for you.

((((((Shirley)))))

Much Love,

Scotti

[Airman Doors, USAF]

Shirley,

If I could do anything for you, I would. In a heartbeat.

I'm so sorry. I've never experienced anything like what you're going through. I sincerely hope everything works out for you and your family.

If you need to talk, my email and AIM is in my profile.

My thoughts and prayers are with you.

-Dave

[whiterabbit]

{{{{{Shirley and family}}}}}

I think I need to go hug my brother, like RIGHT NOW.

[Shirley Ujest]

Update:

On Friday they did a brochostomy (I know I butchered the spelling of the procedure) Basically they dropped a line through his ventilator into his lungs to get a sample of what in the hell it is down there making him so sick. The drugs he is on are not working to make him better, but he isn't declining either.

On Saturday they performed the tracheotomy. He did well and had to lay flat on his back for 24 hours. He does not require as heavy as sedation and when the morphine wore off, my mom could see his shoulders shake and his eyes tear. He doesn't want to die like #3 did. That was really hard on her.

Today the results from the brochostomy came back and they are pretty sure that he has a pulomonary embolism and are giving him blood thinners. I'm not sure what this all means. This is the first chance I have had to go on line at home in quite some time and I came here first before searching web MD.

I wasn't there saturday or today. Saturday, I helped my mom move #2 personal effects from the group home where he was at to back home (movers moved his furniture), then I went home with my kids to clean the house in prep. for my son's 3rd birthday party. I am also pretty sick (as the kids are) with a lovely cold and nasty cough. (Naturally, of the three sicko's in the house, I am the worst off.) I haven't been sick since December of 1999, and then, oy, boy was I sick.


Scotti - So far, two brothers ( out of four) have died. Two more will more than likely die the exact same way, Pnuemonia related because of MD. I don't know how my mom bears it.

Please keep Tom in your prayers. Pray that if he has to go, that God takes him and not my mom having to make this decision. Pray that it happens when she is not there. ( She is there from 9am until 7-8 at night. She won't leave his side, even for a hour away to come to easter dinner or my son's birthday party.)Pray that if he lives, that he doesn't sink into a terrible depression (he suffers terribly from depression, as one might imagine)and waste what time he has left away in bed doing nothing.

I know this sounds cheesy and corny, but all the thoughts and prayers really do mean a lot to me.

[Coldfire]

Holy shit.

Thanks for the update, Shirley. I somehow missed this thread before.

I don't really know what to say. I hope your mother doesn't have to make that horrible decision...

I wish you and your family all the strength in the world in these difficult times. I'm not religious, but I'll be thinking of you. Take care.

[Geek Mecha]

My thoughts are with you and your family, Shirley. I am so sorry your family-- especially your mother-- has to go through this.

[rocking chair]

thank you for the update.
the courage and grace of you and your mum are truly inspiring.

[tomndebb]

I am so sorry, Joan. You are all in my prayers.

[Spiny Norman]

Dammit, Shirley.

I feel so sorry for you and your family, and I really, really wish there was something I could do. I never figured out praying, but you and your family certainly are in my thoughts. I sincerely do hope you all will get through this somehow, and - if that's not what happens - that your mother will be spared from that decision.

Your amazing courage (and that of your mother) shines through your posts.

Other people have put it way better, still: I wish you strength, courage and peace of mind.

S. Norman

[Harmonious Discord]

I've gone through a lot of shit like this in the last year, and been sick myself. My best friend that died last year learned from being put into the life or death decision spot two years before , for her mother and uncle. Sandy and I discussed things that she or I would never have talk to others about.

The worst part in her life was having to make the critical life death decisions for her mother and uncle. They had no prior statement made up, and no other family members would even answer the doctors.

This weighed heavely on her mind even before the Leukemia diagnoses for her. She arranged ahead of time for what to do, under what contitions. Her passing was hard, but the hard decisions weren't left for others to decide. Please make a document up with your health provisions, before someone you love has to decide for you.

I have another friend that is going to reach a crisis point in his life tomorrow. It's not his personal health, but someone very dear to him. All I can do is be there when he needs someone to talk to.

My point was not to hijack this thread, for I feel the pain of Shirley Ujest and her family. I hope for the recovery of you brother with all sincerity. I want to urge people to make a living will to releive the family of these soul wrenching decisions. It's your life, make these decisions, other's may choose other than what you wish.

You might know more of what I speak, knowning I was Phobia.
(Excuse me I have to give water for the dead. Reference Dune.)

[Shirley Ujest]

Update:

My brother had his trach done last Saturday.

My mom finally got through to the doctors and nursing staff what she had been trying to get through to them since day one. That with MD, in this advanced stage, a person does not breath at 100% oxygen like you and me. Voice projection is nearly nonexistant for them.

Brother #4 only breaths at 50%. (He is in therapy to help him with this.)

Brother #3, is at about 60% which quite possibly could be at his normal breathing rate. Once my mom got through to the people with the degrees and titles (most of whom really no nothing about Duchene's Dystrophy)and brother #4 ( a nurse) explained in medical jargon, the doc's and rn's changed their prognosis and outlook on him.

It took nearly 10 days of my mother being patient and repeating it over and over and over, ad nauseum, until the friggin light bulb went on in someone in charges head.

They now are fairly certain he does not have a pulmonary embolism.

The Pnuemonia seems to be going away. He isn't as drugged up as much and he is agitated because of all the tubes.
( Who would be.) He cannot communicate at all. They are trying to wean him off the vent.

It looks like he will pull through this, but have to go one to a continuing care place for who knows how long.

He is still a "no code".

Harmonious: I agree completely with you that people need to discuss this grim subject with friends, family and loved ones and draw up a Living Will. Living Wills are not valid every where, but it can really help the surviving family members make a decision much easier.

When #3 was on life support, he signed the necessary paperwork some years ago OK'ing the removal of life support if there was no hope. On his form he wrote "I have lived my life." No truer words had ever been written by him.

[elelle]

Shirley, best strength to you and your Mom to help your brother through this. My heart goes out to y'all.

[rocking chair]

thank you, shirley. it's good to hear that things are looking more hopeful for your brother.

[JimmyNipples]

My thoughts are with you and yours. Take care Shirley.

[Gr8Kat]

Shirley, I'm sorry to hear about brother #3's passing (and I'm sorry I didn't see your threads earlier). I hope brother #2 has continued to improve. Please do keep us updated.

I can't remember if you've told us before, but what kind of muscular dystrophy do your brothers have?

[wring]

add my sentiments to the list as well. I have all the admiration in the world for people having to deal with issues such as this. have watched too many situations.

do you have some one who can 'spell' you and your mom from time to time? (I know she won't leave at the hospital, but some one to run errands or whatever?)

[DRY]

Shirley, my thoughts are with you (one of the classiest dopers on the boards) and yours. I know that you have the strength and dignity to deal with whatever comes your way.

[Pammipoo]

Wow...what a bummer mother's day for your mom..my heart goes out to your family.

I knew a guy a few years back, there was a gene in his family (sorry, i don't remember what it was called....), all the guys carried it, and it basically proclaimed their deaths from an early age. His mom had 5 sons, he was the only one who didn't carry the gene. I can't imagine knowing from birth that 4 of my babies wouldn't make it past age 21....it must be a horrible feeling. Even worse, the gene passed on to his baby boy...he's the sweetest guy in the world, and he's now lost 4 brothers, and eventually a son too...poor Ryan...