brian back in the hospital - 3rd time this summer

[catwoman]

Deanne:

Hope you got a little bit of sleep -- whatever the quality -- during the night.

Have you called Brian's doc & transplant coordinator up in Boston? They should be up by now.

 

[hensylee]

an official complaint is in order when this is all over. I am so sorry you have been effectively rendered helpless. get on the phone today and call whoever you need to and forget about appropriateness. This is Brian and he's the important one. wishing you and Brian a better day and that help is at hand. Blessins.......

 

[twinmaker]

I'm so sorry to hear about everything that is going on and I'm hoping today is a better day. Sometimes these doctors can be so insensitive. And you're right. Weekends are messed up when it comes to doctors coming in. I'm keeping you and Brian in my prayers. LINDA

 

[Lynlw]

Deanne I haope you have gotten somebody to helpBrian by now..this whole thing is a disgrace especially since you wanted to have plans in place Incase something happend like this last night.

Can you fire the neph and get a new one? I would...Actually I probably would be threatening to have Brian transferred to another Hospital, if they don't want to help him. I actually did this when Justin was 17, I didn't havet to transfer him, but that's only because standing at the nurses station letting everyone know I would, got things moving. I can't remember what Hospital Brian uses, but if there is any way to get new Kidney docs, I would.
The frustrating thing is you had Brian admitted Thursday evening, just so he didn't get as sick as he is now, and my heart breaks for you.

 

[kfay]

Deanne, I'm so very sorry to hear that Brian is back in the hospital again. It's awful that you guys are having such hard time with his care. I agree with others regarding firing the kidney Dr. If you have other options, I would do it pronto and I would call him and personally tell him why you are firing him.

My thoughts are with both of you. Stay strong. Please keep us posted.

Kim

 

[Nancy]

Fire that doctor! He is absolutely not the kind of doctor your son needs right now. The doctor is all about himself and not about his patients. He is not giving adequate care. He needs to go.

 

[Marguerite53]

Checking in. As has been said, hope you are getting some much needed rest and most especially some peace of mind because there has been some appropriate action taken to relieve Brian's ongoing discomfort.

Hugs still coming!

Marguerite

 

[briansmom]

I was able to talk to one of Brian's surgeons at 3 am, he was here to do a heart transplant. This doc is one of my favorites. I told him what was going on and he promised to talk to the nephrologist. The surgeon has a plan for a test on his kidney that does not involve dye, but it requires a specialist who won't be here till Monday, but they have him scheduled for early Monday morning. His creatinine is 6 today, but the rest of his kidney numbers still look good. They are still not planning on dialysis. I asked that they be sure and tell his surgeon ASAP (he is still in surgery).

They finally gave Brian some ativan last night (another thing that should have been way easier than it was). It put him to sleep and he stopped throwing up. I went down to the motorhome at 3:30 to get some sleep and my husband came up to the room to wait for the docs. The nephrologist came in about 8:30, my husband called me and I literally ran up here (the motorhome is clear on the other side of the campus). I missed the nephrologist by 20 seconds, but he told my husband that he would be back to talk to me - I'll believe that when I see it.

I have talked to the transplant coordinator and she is getting as frustrated as me. She gave me some specific questions for the nephrologist and said she would call me again after her next session.

So I am waiting for the nephrologist, I don't think I can fire him till tomorrow when I will get his regular nephrologist back anyway. The problem is I don't trust him now so the best I can hope for today is seeing the surgeon and getting some reassurance that he agrees with the plan.

Thank you all for telling me that I am not out of line. Sometimes they make you feel like you are the only one in the world who would react this way. Thank you also for your concern, you have no idea how much it is helping me to be able to "talk" to all of you.

 

[Lynlw]

This sounds much better, I'm glad you were able to talk in person with his surgeon, I'm sure he will make sure things run smoother. It must be frustrating for the coordinator to be so far away. When Justin was readmitted for his infect last surgery HIS surgeon was at a conference at Michigan so I know how that feels. it is very hard to feel powerless, I'm glad Monday will be here soon. (and Thankful it didn't happen last weekend when Monday was a Holiday)
Have you been able to eat today? Is is a matter of getting food or are you just not hungry?

 

[Nancy]

I am sure you know this, but you can have the doctor you wish to speak with paged in house, and he is supposed to call you back at his next available moment if he is in the hospital. At least that's how it worked here.

 

[briansmom]

update 9/13 10:40 pac time

update 9/13 10:40 pac time

nephrologist just came back, I had a nice long conversation with him (probably 30 mins). I was VERY good, told him he upset me greatly yesterday and that I was one of those people that needed to be educated and be a partner in my child's care. He apologized for how he handled me yesterday and I believe he meant it.

I asked him why no dialysis and he said because his potassium and fluid status were ok. He agreed to rerun labs this evening and he promised to check them from home and come in and put him on dialysis if his breathing was bad or his potassium level rose. So now there is a plan which makes me feel much better.

If he makes it through this evening without dialysis they will do the tests tomorrow and put a dialysis shunt in at the same time.

Again, I can't thank you all enough for helping me stay strong.

Lyn, I haven't eaten yet today but it is still early. My husband went down to walk our dog - we bring the dog too, it is nice to go out to the motorhome and be greeted by a wriggling dog who is so happy to see you. When my husband comes back up here i will go down and try to eat. I am just not hungry but know that I have to take care of my self.

 

[EireCara]

Deanne, I wish I were there to support you in some way. Be assurred I have you all in my prayers and will do until good news comes, as Im sure it will. Brian is a strong young lad and has a very strong mother by his side. ((((((((HUGS))))))) x

 

[Marguerite53]

Sleep, wonderful sleep. I'm so glad that you and Brian got some rest.

Oh, and things blinked while I was writing, so now you've given us another update. A Plan!! Hooray!!

Good for you for having the grace to be civil to this doctor. And good for him (wise) for him to apologize. We are all still dealing with doctors who were trained before information became so available to patients and family. I suspect they were trained to balk lest they scare people. What they do not realize is that it is far scarier to not be given information, and to not be given some shared part in the plan.

Good, good good good!!!!!! Go spend some more time with your precious dog. They do wonders; they sense everything and can be very healing. Is there any way at all that you can pipe in the dog to Brian? I mean, use your laptop webcam from the motorhome and have Brian get a visit from the wagging tail, too?? Poor kid. Jeeez. So much to go through.

Try to relax some now. Brian needs a no stress day.

A proud pat on the back for you today!!

Marguerite

 

[Lynlw]

I'm glad you got to talk to the doc and hopefully he will be more attenitve now. and isn't it a good feeling to actually have a plan? How great that must be to have your dog there, they give the best hugs and kisses

So you like carnation instant breakfast or anything like that when you don't feel like eating?

 

[Maryka]

Sorry for all the trouble concerning Brian. Thanks for responding to MY thread and God be with you and Brian!

 

[Nancy]

I'm glad he came back to speak with you. He's still a ****! Hopefully he learned a lesson about caring for others instead of himself.

 

[Star54]

Any update? Is it the appropriate time yet to call the nephrologist? He sounds like such a nice guy, to tell a nurse what the "appropriate" time is for him to be a doctor. Is there any other nephrologist that you can be referred to?
My prayers are with for your son, and for you not to wind up in jail. Calm down, see if you can get something for your anxiety and please eat, you will be no good to your son if you pass out.....

Linda

 

[Star54]

Sorry, I did not read the second page of the posts...

 

[Lynlw]

Any update? Is it the appropriate time yet to call the nephrologist? He sounds like such a nice guy, to tell a nurse what the "appropriate" time is for him to be a doctor. Is there any other nephrologist that you can be referred to?
My prayers are with for your son, and for you not to wind up in jail. Calm down, see if you can get something for your anxiety and please eat, you will be no good to your son if you pass out.....

Linda

Linda there is a recent (less than an hour update about 6 posts above yours #91

 

[Karlynn]

Deanne - you are a strong woman with a lot of self-control. I probably would have ripped the neph a new one and then asked question. I'm sure your way got more answered, than my way would have.

How wonderful that you have your dog with you. Do they let you bring him up to see Brian?

Prayers are still heading upwards. Thanks for being so good at updating us.