brian back in the hospital - 3rd time this summer

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briansmom

briansmom

Well-known member
Joined
Nov 28, 2006
Messages
805
Location
San Diego, CA
I just can't believe it. He is in renal failure (creatinine 2.8) and of course heart failure (BNP rising at 1400).

Warning - selfish rant coming -

I don't know how much more we can take. I am so tired of feeling like we live on the edge of a cliff. I am sitting in an extremely uncomfortable chair with my son in the ER waiting for a bed. We have been here for 6 hours (they did bring him straight in and get him treated right away) They are arguing with me about the need to send him to the "heart" floor of the hospital because they don't think it's "medically necessary" - huh!!!! We have been through this the last 2 times we were here - Brian seems to have a knack for needing to come in at about 5 o'clock in the evening and then nothing happens till his transplant coordinator comes in in the morning, then we waste most of the day getting him moved before his docs get to see him. Of course I was scheduled for a vacation next week, I have already canceled twice this summer because he was in the hospital. I wish I could run away. I feel so inadequate.

update - doc was just here and yes, they agree they need to send him to the "heart" floor.
 
Dear Deanne,
I am so sorry to hear about Brian, you all have certainly been through it the last few months. I hope and pray that you all get sorted, i cant imagine what as a mum you are going through, it must be so frightening to see your child suffer the way Brian does. This is the place to have a rant im sure that nobody could blame you, you are so brave.
My love and prayers are sent you all, please let us know how Brian and you are doing and feel free to have a good rant anytime, its good for you, i know that because im a great ranter LOL.
Take care
With all my love
Jane
 
This is the most terrifying thing to me about being a parent. To have your child in pain or in danger that you cannot fix, cannot affect, can only sit nearby and watch, while your soul leaks onto an impersonal tile foor.

I can't tell you how much I feel for what you are going through, how intensely frustrating it must be, how helpless, even how angry you must feel.

It is all about Brian, but that doesn't make you one bit less human, one iota less a mother, take away the tiniest part of the ache.

As always, you must push back the dark and wait. We can't be there, and we couldn't take away the pain of it if we were, but in some way, know that we sit beside you.

Very best wishes,
 
I am so sorry to hear about Brian. I will be keeping you all in my thoughts and prayers. And never, ever apoligize for ranting here. Just know that we are here for you. LINDA
 
I am not a mother, but I feel your pain; I am mentally sitting in that chair with you, holding your hand, and wishing there was more that I could do. Now that he's on the heart floor, though, I am sure you'll be able to relax a bit more, as it seems it is his own doctors that are looking after him now.

Rant/vent any time you need to - this is a safe place for you!

On a more practical note, could you ask the docs on the heart floor to issue ER with orders that if he comes in to ER, that they automatically move him to the heart floor?
 
You all are in my prayers. Please rant here as much as you want - we have big shoulders.
 
Bless you. Averagewise, it's tough to be mom but when you have an ill child, it can become and unbearable load now and then. It doesn't lessen your love or care for your child, just makes it harder to get by every day. Isn't it just amazing that we, as moms, still go on - and on - to get whatever our child needs. And we don't consider our own welfare first. May our dear Lord be with you and hold you up every day, and especially today, when you need some extra strength.

You always know that we have Brian in our thoughts. He is so fragile. He is in our prayers today, along with you. Blessins.........
 
Deanne,
I have already begun to pray for Brian and you as soon as I read your post this morning. I cannot even begin to imagine the frustration you must be feeling. Give Brian a huge hug from me. And as far and the ranting and venting goes, "it's all good" that's what we are here for. Also, when no one is looking, punch the heck out of a pillow if you can find one...
 
Dear Deanne
More hugs and prayers coming your way...May you feel the comfort, the strength and unfailing love of the Lord uplifting you.
God be with you.
Sheila
 
well the ER docs lied to me. They did not send him to the heart floor. They sent him to the 5th floor but to the opposite side from where the heart specialist nurses and docs are. I was confused when we got to his room last night and I didn't know any of the nurses - now I know why. They came in at 7 this morning and said that the transplant coordinator wanted him moved to the heart floor so now we are waiting for a bed there. Meantime nothing is happening here I don't even think he has a nurse anymore because they know he is moving.

Yes, I will ask them to put a note in his chart, but their computers were down last night so I don't know if it would have helped. Last time this happened his primary care told me that if it happened again to have them call him directly (instead of the on call doc), but they wouldn't do it. I really want to rip someones head off, but I realize that it is probably misplaced anger at the situation that Brian is in. I will have to try hard not to be too much of a b&*tch when I firmly request the note in his chart.

I do want to say that they treat him phenomenally well here - as soon as he gets to the right floor.

Thank you all so much for your support, there are things I can say here that no one else understands
 
I don't think you're misplacing anger. When you know what the drill is supposed to be because you've done it before and still things get done another way, it's very frustrating and the anger arises from real complaints. It may be more intensified because of your worry, but it's still something you are forced to deal with on top of your major concerns about Brian. Take deep breaths. I'm glad you have such trust for those that work with Brian.

Thanks for keeping us posted. We're here for you!
 
tobagotwo said:
This is the most terrifying thing to me about being a parent. To have your child in pain or in danger that you cannot fix, cannot affect, can only sit nearby and watch, while your soul leaks onto an impersonal tile foor.

I can't tell you how much I feel for what you are going through, how intensely frustrating it must be, how helpless, even how angry you must feel.

It is all about Brian, but that doesn't make you one bit less human, one iota less a mother, take away the tiniest part of the ache.

As always, you must push back the dark and wait. We can't be there, and we couldn't take away the pain of it if we were, but in some way, know that we sit beside you.

Very best wishes,
Click to expand...
Well said Bob.Sending my prayers your way also.
 
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