Wednesday, March 11, 2009

Refused!

Rich refused the feeding tube.

His dear brilliant thoracic surgeon told him it was not safe for him to keep trying to get his nutrition with Ensure.  He's visibly losing weight.  He's already had one bleeding episode.  He is in danger.

Rich is talking to other specialists in Chicago and Pittsburgh about other surgical techniques, etc.  He's trying to get out of the feeding tube because he's afraid of the trauma of the insertion.

The very patient and kind surgeon and physician's assistant spent hours talking to him.

I don't think he's thinking clearly.

At one point (several, actually) I almost got up and left the room.  I wanted to tell him he's on his own.  He was being unreasonable and irrational.  I was almost in tears.  I closed my eyes and prayed.  I'm sure the grace from your prayers was filling the room too.

The PA told him his doctor would not do the surgery if he did not get the feeding tube first.  His doc said he is visibly malnourished.  He even said, very gently, that Rich looks like he just got out of a concentration camp.

Finally,  Rich said why can't I have a couple more days to think about it.  (He's already had several days.)  The good doctor said he could reschedule for Friday.

Rich is still not sure if he will do it Friday.  He might want to opt instead to have the surgery done by some doctor in Pittsburgh who has a lot of experience with accalasia.

I told him I can't go to Pittsburgh.  I have a family here who needs me.  U of M is an excellent medical center.  

I'm so emotionally exhausted from this and other stressful stuff in my life that I've retreated to my bed where I'm "playing" with my laptop.

God bless you all and thank you for your prayers!

15 comments:

Anonymous said...

I love you Rosemary! Is somebody bringing you Starbucks while you're on retreat in your bed?? I wish you were MY sister!

Anonymous said...

Rosemary,
Please be aware of my affection and prayers. You've already done so much, and you need to take care of yourself, too.
I will promise to continue to lift him up in prayer, and will pray for continued strength for you.

Mrs Marcos said...

I'm sorry. This must be heartbreaking for you, I can't imagine how helpless you must feel. You (and your family) will be in my prayers.

Suzanne said...

See there, Rosie...just feel all of this love..its okay, sweetie..it is going to be okay. The peace of Jesus be with you tonight and on. Amen

ukok said...

Oh dear, i'm sorry to hear this. I can appreciate your brothers apprehension, but i also sympathise very much with you. It is so very frustrating when we feel our loved ones are being unreasonable, particularly when they are refusing that very thing which is best for them. I prayed for ich at Mass last night and i will continue o hold him, and yu, in my prayers.

I know it isn;t very nice, and i suppose you may have mentioned it, but perhaps you could ask him to think of his children? They have already lost one parent, they don't want to lose another, and he is putting himself very much in danger, medically, by refusing this proceedure. It's kind of blackmail, but it's also, i'm sure, very true.

Recharge your batteries now. Be assured that a lot of people all around the world are thinking and praying for you. You have to think about your needs and the needs of your family first and foremost.

It seems like Rich isn't thinking clearly at all, and ordinarily he would probably be able to see how unreasonable he is being, perhaps he does need a little more time to get his head around this, but in the meantime you are all worried sick about him making things worse than they need to be.

I'm sure one day Rich will thank you for all the love and support you have given him, and for being the clear thinking one who helped him, not necessarily by ageeing with him, but by putting things in perspective at a time when he is unable to.

(((big hugs)))

ukok said...

Oh heck, i'm so sorry for all my typo's Rosemary. What an ass i am.

Sarah - Kala said...

Rosemary - I will keep praying! You get your rest and stay strong in the Lord by your weariness of it all. Keep giving it to Him. It is the "I don't understand why they cannot see it" time - he's operating out of fear. I will pray he doesn't fear the feeding tube. God have mercy.

Anonymous said...

Hi Rosemary,

I saw your blog which was linked on a friend's blog a while ago and I just liked it. I have casually read your blog and really like you. You are a very good person and your family seems lovely.

I am a nurse and saw your post re your brother's refusal of a feeding tube. In general, I personally do not like them, but in your brother's case I hope he agrees to it. Instead of putting it down his nose, they can do a very simple surgery and insert one directly into his stomach. He can do intermittent feedings so he isn't hooked up to a machine or anything. He can also get medication through the tube. I know the mechanics of the situation are not the real issue here, but if he knows that the tube is hidden under clothes and used when convenient, then maybe he will be more willing. I worry also about dehydration.

It seems he has a real shot at recovery. He just doesn't really believe that right now and that is why he is not in fighting mode. Depression (completely understandable) is probably a component. Should he consent to the tube, I would consider having some sort of antidepressant prescribed for a while. It just might take the edge off.

You have my prayers. I hope he consents.

--Linette from California

Mimi said...

Oh hon, oh, oh, oh. My love and prayers. I think it is just panic talking, but that doesn't make it any easier to deal with.

Prayers.

Rosemary said...

You are all such dear friends!
Mary, I love you too and wish we were sisters too! (No one brought me a Starbucks but Liz did bring me an ice water:-)
Gail, thank you! I am trying to take care of myself. It is important.
Mrs. M, yup, I feel helpless but, fortunately, it's a feeling I'm getting used to.
Suzanne, aw, and peace be with you too, sweetie.
Deb, you are very insightful and so right. You make me cry AND laugh (at your second comment)
Sarah, yes, he is operating out of fear. He knows it too, which is good. I will give the weariness to the Lord.
Anon, thank you! The doctor didn't want to do the kind directly into his stomach, I think because his next surgery is so close. He is on an antidepressant. Good idea. thanks for the prayers.
Mimi, yes, it is panic talking. Thanks for the prayers.

Denise said...

Rosemary,

You and your brother are in my prayers. God Bless, Denise

Jesse Ray said...

I am praying God's grace to be felt in this situation.

Lyndsie Miles said...

Oh, Rosemary. I know the Lord is with you both. This is a very difficult time, and His grace will attend in amazing ways.

Much Love!

Colleen said...

Prayers, prayers!

Rosemary said...

Thank you ALL so much!