brian back in the hospital - 3rd time this summer

[ctyguy]

Deanne...I've been checking for updates 5 and 6 times a day and Im glad to hear that Brian has improved. What you guys are going through is just brutal and I commend you for keeping it together so well. I know my own personality I would have gone postal on the Nephrologist. Try to keep up your strength, eat what you can, sleep when you can. Just know you have a whole bunch of folks who are pulling hard for Brian and you.

 

[Herburban1]

Deanne, I just checked in and I am so sorry for all the BS you have been through..Glad things are looking up..I laughed out loud about sneaking the dog in. Maybe if you put a johhny on it and put it on a stretcher...His heart Dr. is probably hanging out with mine in Boston. Now go eat something... Louanne

 

[hall]

So glad to hear he has improved. As for the docs......... You all are still in my prayers.

 

[tobagotwo]

You're doing very well, I think. I'd have half the people helping me out and the other half afraid to talk to me by now. At least you manage to keep some dialogue open with all of them. I don't know how you do it.

Very best wishes,

 

[hensylee]

just checking in to see how things are and to let you know you are thought of often every day. Blessins.......

 

[Freddie]

just checking in to see how things are and to let you know you are thought of often every day. Blessins.......

Ditto for me too.
((((hugs)))))

 

[briansmom]

update 9/15 10:30 pac time

update 9/15 10:30 pac time

Last night our new Favorite nurse Mike was on. He is so good with Brian that I went to bed shortly after dialysis was done (midnight) and didn't get back to his room till 8:30 this morning.

His creatinine is 4.1 this morning. He peed 1500 ccs yesterday before dialysis and 475 ccs this morning. They took an additional 2 litres off of him with the dialysis - remember nephrology kept saying he was dehydrated!!! They are not going to do dialysis today. His only other problem is that he is still bleeding where they did the cath yesterday. He is on heparin, plavix, aspirin and coumadin - heparin will stop when INR gets back to normal. Unfortunately they gave him a lot of vitamin K to get his INR down for the procedure yesterday so we will be on an INR roller coaster for a while.

It does not look like they are going to let him out of ICU today, but we have not seen the cardiologist yet. They have to get rid of the art line in his groin and the swans in his neck before he can leave ICU.

I am certainly going to pursue the appropriate way to censor the nephrologsts. I really hope that is all I have to worry about now and that Brian's kidney and heart make a full recovery.

Again, I really can't stress enough how much your support and encouragement have meant to me.

 

[Karlynn]

I really hope that is all I have to worry about now and that Brian's kidney and heart make a full recovery.

From your lips to God's ears!

I'm glad things are improving for him. I guess after all of this, getting the INR in range is a smaller problem!

 

[Lynlw]

I can't imagine how much more comfortable he must feel with the 2 liters off. Thank God the heart surgeon had then stop the fluid the kidney docs had him getting. I am glad you are not going to let this drop since Brian is finally getting the proper treatment.
Hopefully you are eating now too?

ps I've thought alot the past few days about this being exactly why many of us stress someone always be with their family member when they are in the hospital if at all possible. I can't even imagine what would have happened to Brian if he didn't have you there fighting for him.

 

[Nancy]

Deanne-

I found when I wrote complaint letters (and I wrote quite a few) they were received better if I also mentioned the people who provided exceptional care. That way, no one thinks you are just another whining, complaining, person.

I put the nice comments first and then let them all have it at the end.

One letter which received very positive reviews (from medical personnel who came to me on the QT) asked that everyone who was reading this letter would imagine how they would feel if their son, daughter, mother, father, sister or brother, wife or husband were treated this way and brought to critical condition due to inept or neglectful medical care. I would certainly mention the comments that the neph said about having to get going because he needed to go to his son's football game. That comment said it all for me. It was all about him, and he wasn't even sensitive enough to realize the impact on you and your son as Brian was struggling for his life hooked up to all kinds of machinery to try to save his life. Brian would surely rather go to a football game too.

Stay tough as long as Brian is still in the hospital. His care there still has to be watched like a hawk.

 

[Lynlw]

Deanne-

I found when I wrote complaint letters (and I wrote quite a few) they were received better if I also mentioned the people who provided exceptional care. That way, no one thinks you are just another whining, complaining, person.

I put the nice comments first and then let them all have it at the end.

One letter which received very positive reviews (from medical personnel who came to me on the QT) asked that everyone who was reading this letter would imagine how they would feel if their son, daughter, mother, father, sister or brother, wife or husband were treated this way and brought to critical condition due to inept or neglectful medical care. I would certainly mention the comments that the neph said about having to get going because he needed to go to his son's football game. That comment said it all for me. It was all about him, and he wasn't even sensitive enough to realize the impact on you and your son as Brian was struggling for his life hooked up to all kinds of machinery to try to save his life. Brian would surely rather go to a football game too.

Stay tough as long as Brian is still in the hospital. His care there still has to be watched like a hawk.

Once again , my experiences are alot like Nancy's when I wrote letters to complain about the bad things, I started with the good ect.

I also would mention when you were very concerned and he would not speak to you on the phone because it wasn't an appropriate time.

PS I would also mention that the hospital got a lot of great publicity because of the heart team and Brian, which is what had you so disspointed to see the care from Neph,

 

[briansmom]

Lyn and Nancy,
VERY good points. I hadn't thought about reminding them about all of the publicity and press conferences that Brian has done for them.

Yes, I am eating better.

 

[bvdr]

I am so glad to read your most recent posts on Brian. What does Brian say about the care he has been receiving or has he been oblivious to it?

 

[Lynlw]

Lyn and Nancy,
VERY good points. I hadn't thought about reminding them about all of the publicity and press conferences that Brian has done for them.

Yes, I am eating better.

Good about you eating. (is there anything you or Brian need or want?) It is much easier for me to think of these things when I am sitting in my home, than you, who are in the middle of living this.

What made me think of the publicity, is I had written a very nice letter about the care at one hospital, so nice that the hospial called to ask asked permission to use it in their anual report,and sent me a letter to sign releasing it. when I had complaints the following year, I mentioned the fact I am not a complainer and the letter, and I think that helped in them seeing there really WAS a problem

 

[Lynlw]

Facebook update

Facebook update

In MY opinion this is the kind of crap that gives hospitals a bad name. Heck if they treated Brian correctly,instead of wasting days, .... They must be furious (I want to make sure you know THis is my 2 cents Deannes update is below, Lyn)

"Now security is telling us that we have to move the motorhome because we have been here three days. I think Alan is going to go postal on them. I am trying to call in favors, otherwise I am emailing the hospital CEO. I think Brian has done enough ...press conferences from them that they can let us have the motorhome when he is here."

 

[barb]

Deanne,

I am so sorry to read all that Brian and you have been through. Please know that you have been in my prayers and will continue to be. You are an amazing advocate for your son. Not an easy job with some of the doctors you have had to deal with. God bless.

 

[Marguerite53]

I am still checking in every few hours and still in complete amazement that this ordeal can continue to have sour moments. I sure hope you find a place for your motor home. I hope that CEO lets you park it in his driveway!!! He should! What else are you supposed to do?

My best wishes continue to go out to Brian for his phenomenal fortitude through this. Gosh, I hope you have the most excellent day tomorrow!!!

Marguerite

 

[Lynlw]

I am still checking in every few hours and still in complete amazement that this ordeal can continue to have sour moments. I sure hope you find a place for your motor home. I hope that CEO lets you park it in his driveway!!! He should! What else are you supposed to do?

My best wishes continue to go out to Brian for his phenomenal fortitude through this. Gosh, I hope you have the most excellent day tomorrow!!!

Marguerite

They are letting it stay now, altho I like the idea of parking it in the CEOs driveway or better yet that Neph docs parking spot

 

[AldridgeBill]

Not much to add to what has already been said here. But, I want to add my prayers and best wishes along with so many others. Glad there are some great cheerleaders here to take up the "slack" of the sadly missed "Granbonnie" she would have had her pom-poms just a flailing and maybe a few words for some administrators someplace.

All the best,

Bill

 

[briansmom]

Well my husband went ahead and moved the motorhome out to the street because the streets are empty at night. We will move it back tomorrow night. The big problem is that there are only 2 motorhome spots and right now there are 2 motorhomes and a trailer. The trailer has been there forever and they don't know who it belongs to. They keep telling us to move our motorhome so they can tow the trailer and then they don't get it towed. Today they told my husband that we had to go because we had been there more than 3 days and they also needed him to move so they can tow the trailer. So we'll see if they get it towed or not. When we are parked on the street we don't have plug in power and we can't put the slides out. I have been assured that someone in the hospital will override security on this issue when we need it.

Anyway...I have had 2 meetings with hospital managers and am working my way up the food chain to ask that they review Brian's experience on this admission. It is also quite obvious from talking to the cardios and his PCP that they are all disappointed in how nephrology handled things and they are trying to ensure that this never happens again. Brian's surgeon stopped by again today and said that they had presented Brian's case this morning to the vascular surgeons and the interventional radiologists to ask for suggestions to catch this before a problem occurs. They seem to think that since the stent occluded once it may well happen again. They also are going to try to get the new drug eluding stent for Brian. I just want to remind you that his surgeon is doing all of this in spite of the fact that he essentially should have nothing to do with Brian on this admission. I feel truly blessed to have the team of cardiologists and cardiothoracic surgeons that we have.

Brian has been pretty sleepy today and has not peed very much, though they did get a total of 4 liters off him yesterday. He seemed pretty depressed today and said that he didn't want any friends to come. That just broke my heart. Later, one of his friends called and asked if he could come and Brian said yes. He seemed to perk up then and he ate a little dinner also. I can't believe how little it takes to scare me about him now.

The cardio hopes that we can get rid of all the lines tomorrow, but it will depend on whether he needs dialysis or not.