brian back in the hospital - 3rd time this summer

[Nancy]

That is one insensitive man! How dare he even mention going to his son's football game when your own son is in such a terrible medical situation right now?

I agree, he should have kept his big mouth shut. It wasn't necessary to even bring that up. He's a ****!

 

[Karlynn]

I'm glad the pee continues to flow. Your Transplant Coordinator sounds like a real angel. God bless her.

 

[CThrock]

Thanks for the update Deanne. I will keep Brian in my prayers.
I had a kidney problems and almost had to go on dialysis about two years ago. I have to get a check up every 6 months. Its call IgA Neuropathy it took a toll on my kidneys creatinine was over 4 also and of course it is a rare kidney problem. The dr put me on predizone for 4 months and that took care of it for now but still can come back. I was a pretty sick puppy and I thank God for my family hanging in there with me. You hang in there to. I will pray that God gives you the strength.
Prayers always,
Crystal

 

[hensylee]

thank you for the update on Brian and the fact he's voiding means there is function in the kidney(s). That's always good news. We will continue to keep you in prayer during this trying time. Best to all of you.

 

[Cris N]

Deanne, my thoughts and prayers are with you and Brian. I hope he continues to improve and that his caregivers can figure out what's going on. I can only imagine the toll this is taking on you... hang in there & know that you can always pop in here for a rant session.

 

[briansmom]

Brian has not peed since this morning and is now nauseous and SOB. Nurses are sitting here telling him that he is doing fine because his O2 sats are good. Asked them to call the doc so we at least have a plan for tonight if it gets worse. There is nobody here to do an angiogram tomorrow so I don't think they are going to do anything until Monday. I think they can put him on dialysis if they need to. He is not eating either.

God this sucks!

Oh, I did eat a half sandwich today

 

[Lynlw]

Oh Deanne this is not what I wanted to hear. I think it is a good idea to have a plan for tonight, and hopefully not need it.

 

[catwoman]

Deanne:

The transplant coordinator and I think the cardio are in Boston. Who are on call for them?
With nausea, anorexia, SOB and no more peeing, Brian certainly needs something done stat. I'm sure you've been pulling out your hair, dealing with the situation, particularly over a weekend.

I am sending more prayers...

 

[Marguerite53]

Just checking in and this was not what I was hoping to hear. I'm sorry he seems to have slowed his progress.

YOU need to eat more so that you can think straight, young woman! Please, even if it's only a protein milkshake type drink.

Brian has been in my thoughts all day and will continue to be there. Sending continued best wishes your way.

Hang in there!!!

Marguerite

 

[Star54]

Be Strong, please eat, and get your plan for tonight together, my thoughts and prayers are for Brian......

 

[zipper2]

Brian has not peed since this morning and is now nauseous and SOB. Nurses are sitting here telling him that he is doing fine because his O2 sats are good. Asked them to call the doc so we at least have a plan for tonight if it gets worse. There is nobody here to do an angiogram tomorrow so I don't think they are going to do anything until Monday. I think they can put him on dialysis if they need to. He is not eating either.

God this sucks!

Oh, I did eat a half sandwich today

Deanne more prayers coming at yous,sorry to hear this and try
to eat ,keep your strenght going and we continue our prayers
from here for you's......HUGS passed to you and Brian

 

[briansmom]

Now he is puking and miserable. The doc told them to scan his bladder and see if he had any urine, he has 300cc so apparently everything is ok (yes, that was sarcasm). I am still in contact with the transplant coordinator and his cardio. In fact, she told the nurse to call the on call doc. I would call her and tell her what the doc said but it is midnight in Boston and I hate to wake her unless it is an emergency. I don't know if they could even get a dialysis shunt in on a Saturday night so I don't know if there is anything that can be done. I am so irritated because I started telling them this was coming 4 hours ago. But of course they didn't listen because his vitals were still ok. Oh, I got good lip service - "I'm sure you know him better than anyone, BUT". I hate hospitals on the weekend. Do the docs really think their patients don't get sicker on the weekend or at night.

 

[mainframe]

Deanne,

I'm so sorry Brian is having a tough time. You both are in my thoughs and prayers.

 

[TXWildflower]

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

Please whatever you do don't rip anyone's head off. That'll just get messy! Sorry, I'm trying to be funny when there is clearly nothing funny about the situation. I am so sorry that your world keeps getting turned upside down so fast. I cannot even imagine how difficult it is. Best of luck to all of you.

Rhena

 

[briansmom]

I am so f'ing pissed!!! my kid is puking from renal failure and they don't think they should call the nephrologist because he made 300ccs of urine in 12 hrs. This was the on call cardio's decision not the nurses. I feel so helpless.
update:
So after he threw up for the third time I demanded that they call the nephrologist so I could talk to him. He told the nurse that he would not talk to me because "it was not appropriate at this time of night" WTF!! (sorry for the language I am still pissed) it was about 10:30.

I just sat there and cried because I feel so helpless and frustrated. I feel sorry for the nurses because there is nothing they can do to help me and they have to actually deal with the patients and family.

 

[pamela]

I am so f'ing pissed!!! my kid is puking from renal failure and they don't think they should call the nephrologist because he made 300ccs of urine in 12 hrs. This was the on call cardio's decision not the nurses. I feel so helpless.
update:
So after he threw up for the third time I demanded that they call the nephrologist so I could talk to him. He told the nurse that he would not talk to me because "it was not appropriate at this time of night" WTF!! (sorry for the language I am still pissed) it was about 10:30.

I just sat there and cried because I feel so helpless and frustrated. I feel sorry for the nurses because there is nothing they can do to help me and they have to actually deal with the patients and family.

I wish there was a way I could start a protest, right outside of the kidney doc's house, chanting, "You get no sleep until Brian gets treated!"

Stop worrying about the coordinator's rest and call. They gave you their contact numbers for a reason. This ceased to be about your concern for their comfort and has become concern for your son's life. Don't let the on-call doc bully you and if you feel he's doing so, let him know that you are very tired ask that he begin to treat you with the respect you deserve. He gets yours; therefore, he has no need to behave as he has.

Take Heart, nights are always longer when we're worried. Let your heart companions share this burden and try to rest. My prayers are being sent.
Pamela.

 

[Marguerite53]

It's 1:20 am and I cannot sleep. Brian is very much on my mind. These updates are very frustrating and I just cannot imagine how helpless you feel. What about the maternity ward? Can they stop children from being born on weekends or in the middle of the night? No, of course not. So how is it that this doctor isn't willing to respond to you now. Why is he so special!!!!

Oh, bad luck you are having with your key people out of town. And you are unravelling. Brian needs you to be strong. He needs to be strong. Keep digging deep inside you and stay with it. You have done this before and you are doing it again. You are a wonderful advocate for your son. I agree, don't let anyone bully you, that's right.

Sending hugs your way.

Marguerite

 

[skeptic49]

Brian and Deanne are i my thoughts as we wait for hopefully a positive report this morning.

Jim

 

[RI Mom]

Deanne,

I am so so sorry to hear what is going on with Brian. It's hard enough to have a child with one medical condition requiring the care of a specialist but when you get into multiple specialists, it is downright brutal. My child has not been as sick as Brian is right now but I can certainly empathize with the frustration you are experiencing with having too many cooks in the kitchen and nobody taking charge who really knows your kid. I hope that you can get the powers that be on the phone today and get moving on Brian's care. I can't imagine why they would want to wait when he is clearly very sick. Please update when you can and know that we are all here pulling for you and Brian.

Theresa

 

[Karlynn]

I hope you have been able to get some answers or talk to someone by now. I'm a bit concerned that it's been a while since you've posted. I would hope it's because you're getting a little bit of sleep - but that would surprise me.