brian back in the hospital - 3rd time this summer

[Woodbutcher]

Good morning deanne, just a quick hello from England. You're doing a stirling job of keeping your head and your sanity there ! I hope you're getting a little rest as you plug on through this nightmare. Well wishes to Brian too and I look forward to sponsoring him on his next offroad event !

 

[Karlynn]

Just wanted to wish you all a good day! We're still praying!

 

[Nancy]

Joe was on dialysis, and depression is common after treatment. It's a physiological thing. Dialysis takes a lot of stuff from your blood as it goes through the cleaning and purging process, some of it is stuff you need in your body. He will also probably have dietary restrictions as long as he is on dialysis too.

Was he on dialysis before?

And--by the way- Why can't they cut you a little slack about your motorhome? Seems like the least they could do for you. Bring it up at one of those meetings.

 

[Star54]

Deanne,
All I can say is God bless you and your son...I wish I had 1/2 of your strength and fortitude.
Godspeed...
Linda

 

[Ross]

Doing my morning check up. I too, wish I had you as an advocate on my behalf, but I'm sure you'd rather be anything but at this point. Praying for you all. Hope you get the motorhome back in the lot today and no further issues come of that.

 

[escargome]

Good Morning Deanne and Family,
Checking in again. Oh my stars! I hope that Brian is doing somewhat better today. I am praying very hard for him and you. I hated to see what a bunch of poop heads security are. Sometimes, people take their jobs a little to seriously. Since Brian is in their hospital and it surely isn't by choice, you would believe that they could give you a pass. I would certainly bring this up to whomever would listen. Schedule a meeting with the head of security, someone has to have a little common sense and work with your individual situation. Well, I shall continue to pray that things get better for you all.

Oh and by the way I made a voo-doo doll of sorts with paper and named it "stupid nephrologist, security guards, insensitive doctors, etc." then I ran the doll through the shredder on your behalf.

 

[Marguerite53]

Good morning, Deanne!

Sounds like you are challenging things accordingly as you continue your journey to advocate for your wonderful son. I'm glad that your "angels" are now on the prowl at the hospital, too. I know, together with those doctors and surgeons you can create a game plan so that if there is a next time, things will go far better. Again.... you are one amazing woman!

I'm sure Nancy is right about the depression. Please consider having a social worker stop by to see Brian while he is there, getting him someone to talk to once he is out, or, at the very least, explaining (if you haven't already) to Brian that his feelings can be a natural progression from the events he's experienced, chemically based, almost -- like when you sneeze in a very dusty room -- just a body's response. At his age, these things need to be addressed, I think. His ability to break through any depression will surely help his march toward solid wellness. Mind over body, again. I'm sure the vibes he got from your fears and concerns are also wreaking some emotional havoc in him, whether he demonstrates it or not. And once you get some formal apologies from the hospital, I'm sure you will share those with him, too!! He has to know that if this starts to happen again, and he recognizes that it is happening, he will not have to go through this again. No one wants to sign up for this kind of stuff if they have a choice. His psychology surrounding this event (the wrong-doing of the nephrologist) must be addressed by the hospital to him personally. He is old enough to warrant that.

Thank you for keeping us posted here. My thoughts and smiles and hugs continue to go out to you all.

Marguerite

 

[Lynlw]

Good Morning Deanne and Family,
Checking in again. Oh my stars! I hope that Brian is doing somewhat better today. I am praying very hard for him and you. I hated to see what a bunch of poop heads security are. Sometimes, people take their jobs a little to seriously. Since Brian is in their hospital and it surely isn't by choice, you would believe that they could give you a pass. I would certainly bring this up to whomever would listen. Schedule a meeting with the head of security, someone has to have a little common sense and work with your individual situation. Well, I shall continue to pray that things get better for you all.

Oh and by the way I made a voo-doo doll of sorts with paper and named it "stupid nephrologist, security guards, insensitive doctors, etc." then I ran the doll through the shredder on your behalf.

LOL remind me to stay on YOUR good side

 

[Karlynn]

Oh and by the way I made a voo-doo doll of sorts with paper and named it "stupid nephrologist, security guards, insensitive doctors, etc." then I ran the doll through the shredder on your behalf.

You should have taken a video!

 

[Lynlw]

Facebook update 6 min ago

Facebook update 6 min ago

Deanne Moore Praise God! Brian's creatinine is 2.7 today (normal is .6-1.2) He says he is feeling better. I'm sure they will have to get him diuretics soon (he normally takes them at home). Hopefully his kidney will return to normal.
and
Deanne Moore They have sent a blood sample to Tulane University to test for Marfan, though I'm not sure if that will really tell us anything at this point. They are finally talking to each other and trying to come up with a plan to catch these problems before they become critical.

 

[briansmom]

Praise God! Brian's creatinine is 2.7 today (normal is .6-1.2) He says he is feeling better. I'm sure they will have to get him diuretics soon (he normally takes them at home). Hopefully his kidney will return to normal.

The nurse just came in and said they are going to take out the art line and dialysis cath right now so that Brian can start moving around soon.

Chris - I love it. I am going to have to remember that trick!! It sounds very cathartic.

Nancy - once again your advice has proved invaluable. I didn't understand how hard the dialysis can be. He had dialysis once before but it was SLED which was done over a 12 hr period so that it would be easy on him and he didn't seem to have any reaction to it.

Again, I can't thank you all enough. I am astounded at the outpouring of support and even more astounded at how much it means to me and how much I am relying on you all. I think we take this site for granted and truly don't realize how much impact that strangers who understand can have on a person during a trying time. That sentence didn't come out very well but this site gives back to the world in a powerful way.

 

[briansmom]

Thanks Lyn for posting, I almost forgot to talk about the Marfan thing. When I read through all of the previous posts I got all teary and weepy...

The docs really do seem to be getting on the same page finally. When I talked to his PCP yesterday, I of course made a snarky comment about nephrology and he commented that one of the biggest parts of becoming a good doctor is learning humility and that unfortunately Brian's case is a huge source of humility for most of the doctors that treat him.

As far as the Marfan genetic test goes, it is not a 100% definitive test. If it is negative it doesn't necessarily mean that he doesn't have it. It is also about $1500 so I am somewhat surprised that they are doing it. I'm not really sure what it means if it comes back positive. There is no cure and managing the patient is all they do. But maybe it will get him more respect from new doctors.

 

[skeptic49]

Relieved to read the good news about Brian!

Best wishes,

Jim

 

[EireCara]

Just checking in, and delighted to see things are at last improving. Keeping you all in my prayers.

Deanne, you are an inspiration !

 

[Lynlw]

Thanks Lyn for posting, I almost forgot to talk about the Marfan thing. When I read through all of the previous posts I got all teary and weepy...
QUOTE]

When you get home you might want to print a copy of this thread, It can help you remember what happened (or didn't happen that should have) When. THat's one of the things I like about having Justin's page, after a while alot of it becomes kind of a blur, especially when you've had a couple surgeries /admissions, so I like having that record, if just for myself.

 

[hensylee]

checkin in to say 'keep the faith'. we are cheering you on, esp Brian. Many of us go through our days thinking keeping you always in the edges of our minds.

Bill is right, Bonnie would have much to say. Bet she's lookin down.

 

[bvdr]

I'm so glad Brian is heading in the right direction! Humility is a really important trait for a doctor. Hopefully, Brian's experience this time around will end up making a difference for some future patients. Now the discussions we are waiting to read about are the ones about "going home"! God Bless.

 

[Freddie]

checkin in to say 'keep the faith'. we are cheering you on, esp Brian. Many of us go through our days thinking keeping you always in the edges of our minds.

Bill is right, Bonnie would have much to say. Bet she's lookin down.

Bet it was Bonnie who helped the doctors "See the light"

Fingers and toes crossed along with specials prayers continue to go your way.
((((hugs))))

 

[mainframe]

I've been following Brians story with much interest. I'm thrilled he's doing much better. He's so lucky to have such wonderful advocates in his corner.

 

[Nupur]

So happy to hear that Brian's kidney is on the mend and that the doctors are finally able to get their act together. Hope your motorhome is back in the lot. You are one super-mom!! Wishing Brian gets better with no setbacks!