brian back in the hospital - 3rd time this summer

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You're doing so well ... There's absolutely nothing in life that tests our strength more than one of our children being ill and I really feel for you. It's moved me reading this thread, really moved me and I'm pretty bullet proof. I'm thinking about you and your son and wishing you well.
 
Deanne, even if we're only your virtual family, I'm sure everyone on this site is extremely proud of your whole family. You are going thru something that few of us will ever experience and the strength of You, Brian and your husband is amazing.

It's must be so frustrating when Brian's regular doctors are gone and you have to deal with the doctors "on call". Of course these doctors don't really "know" Brian's history and have to rely more on tests and charts without the intuition that comes with treating a patient over a period of time. You were both very gracious at your second meeting and looks like some progress is going to be made toward finding a solution.

You know the old saying, TGIF? In your case it's got to be TGIMonday. Rest when you can, eat what you feel like that makes you feel better, absorb some of that "puppy love" and then face the challenge of tomorrow. You are ONE STRONG MOMMA!

Prayers and lots of positive energy for all of you.

Midge
 
I can't add anything more. Even if you can only eat a piece of bread, put something in your stomach. I know from experience that lack of food will be what shuts you down first.
 
Ross said:
I can't add anything more. Even if you can only eat a piece of bread, put something in your stomach. I know from experience that lack of food will be what shuts you down first.
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That reminds me, since you are in the hospital they probably have fridges full of boost or ensure, if your still not hungry ask for one. I don't like Ensure, but I really like Vanilla boost.
 
Lynlw said:
That reminds me, since you are in the hospital they probably have fridges full of boost or ensure, if your still not hungry ask for one. I don't like Ensure, but I really like Vanilla boost.
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Yes!! That's what I was trying to think of several posts ago..... Ensure!! Talk about pump-head! The name just wouldn't come up. They always have that stuff in the hospital. Have them find you (or Boost) a really nice cold one.

Anyway, just checking in and thinking of you.

Marguerite
 
I just want to say im sorry for all that you are going through. I feel selfish thinking i have problems. This is a real eye opener. I just want to say please give Brian my best, and you and your husband please stay strong for him. You all will be in my thoughts and prayers...
 
Deanne, I've been following this thread since day one. It's heart breaking (no pun intended) to hear what you've been going through. Your tough and you know what's needs to be done, and by-gosh-golly you will get it done BUT you DO have to look after yourself.
How's Brian handling all this? How has he been doing emotionally?
You and yours are in my prayers.
 
Brian has slept all day. he hasn't peed at all, he woke up once and said he thought he could eat so we got him a Jamba Juice smoothie. He drank a little bit, then said his chest was hurting and thought he was having a heart attack, nurse came in and reassured us, Brian threw up, nurse gave him anti-nausea and ativan and brian went back to sleep. At about 4pm I was trying to head to the motorhome for a nap when I ran into Brian's surgeon. This is the same guy that I ran into at 3 am, he was just out of the heart transplant surgery he had started that morning::eek::eek:. He had me come sit with him at the nurses station and he logged in to review all Brian's labs - he is another of Brian's docs that is deserving of sainthood! He of course adamantly disagrees with nephrology about Brian's heart being the problem, in fact he personally came in and did some tests with the swans catheter and said, Nope, heart is not the problem, but his kidney is really stressing his heart. He discontinued the fluids that the nephrologist ordered and said that fluids were gonna make everything worse and he would end up intubated if they kept giving them. I flat out asked him if he thought Brian was going to die, after a pause he said "I don't think so, not now". I think that was reassuring. Hopefully I will have nothing else to report until the morning.
I had my husband get me some peanut butter so that I could have it on toast and get a little protein. I was trying to drink a Jamba juice when Brian got sick, but that kind of ruined things. The good news is I am about 20 lbs overweight so I've got plenty of reserves :rolleyes: Good idea about the Ensure, though.
Thank you again for your support and encouragement, it is helping.
 
The surgeon indeed sounds like a wonderful man and doctor. He sounds kind and smart. I am glad he is staying close to Brian's case. Joe's heart surgeon was just like that as well. Every time Joe was in the hospital and his surgeon saw that he was there, he made a special visit to see him, and also checked out his charts at the nursing station. There were times when he too intervened. He had enough clout that people paid attention to him and things ran much more smoothly when he was around, even when he wasn't primary on the case.
 
Deanne, I can't imagine how hard it is for you. The surgeon seems to be getting it right, I hope his recommendations make things better. Our wishes and thoughts with you and Brian.
 
It's always good to be in the right place at the right time!!! So glad you ran into someone who knows Brian's particulars and who is so well regarded. Wow, what a day the surgeon had already and then you go and smack him with The Big Question! Given all that, I would definitely say that his answer was reassuring. His pause to honor your question was in your favor, I'm sure.

Sometimes when the stomach gets going it's like in spasm and can't right itself in a muscular way. My oldest was like that with tummy bugs. I used a little visualization with him, and asked him to focus on his core and try to think things into being alright. I don't know if it really helped, but it did allow a certain amount of calming. Does Brian know how his body should be functioning? Can he kind of think deeply about adjusting the flow of his fluids; imagining that they are running clean and properly? I know, it's a bunch of hooey probably, but sometimes it is enough of a distraction from the real fear or pain or nausea that it brings some relief. I thought it might be worth a try for him to visualize himself better; give him a little feeling of control.

Wishing you all a good night tonight.

Marguerite
 
Deanne, Brian was in my prayers all day today. Glad you got some answers from the surgeon.
I'm praying for you and hubby too as I continue to pray for Brian. Keep us posted on any information as I know you will. (((( HUGS))) :)
 
I'm glad the surgeon took the time, to go over everything and stop the fluids. I'm sorry Brian is just feeling so miserable on top of everything else, poor kid. Hopefully Tomorrow will bring more answers and they are able to start helping Brian. Good idea about the Peanut butter. I know how hard it is to force yourself to eat when its stressful. Brian and you are in so many prayers. I hope you can feel them and that everyone has a nice boring night.
 
A couple of Brian's friends stopped by and Brian spent about 3 hrs with them playing video games and stuff. It was the first time he had been awake today. He had said that he didn't want his friends to come but I called and asked them to come anyway. I think he had fun which was nice to see.

He peed 250 ccs, but that is it for the last 24 hrs.

Marguerite, those are excellent suggestions. I remember doing visualizations with him when he first got his LVAD out, but I haven't done it this summer. The mind is incredibly powerful and it is certainly worth trying. Thank you for reminding me.

Really hoping for answers tomorrow.
 
Oh good, Deanne.... I'm glad I wasn't sounding too peculiar!! Motherhood is a creative enterprise!! I remember when my middle child was young (much younger than Brian) (second son, then girl is the youngest -- all in 20's now) was having terrible nightmares. I searched in my stuff and found an antique mother of pearl cross on a short chain. I took it in to him, we talked a little bit and we put it on his bedpost. I don't really remember what we decided the cross could do, but darned if he didn't stop having the nightmares!! Sometimes, it just takes a little magic! (and of course, I'm not comparing bad dreams to Brian's present ordeal)

Truly wishing for some magic for you all!

I'm glad you called his friends. They don't care what shape he's in -- they just CARE! Kids are so self-conscious at that age and perhaps he felt uncomfortable at the thought. But obviously it worked out very well, and a supportive distraction. Good job!

I'm off for the night, now, but I am thinking of you and will check in again to see how Monday goes.

Just sending some thoughts out into the air, down a short freeway -- around the ramp and then all the way down Interstate 5!! ;)

You sound much better. Hold that thought!! :)

Marguerite
 
I'm also a firm believer in the use of visualizations. I used them regularly to get my mind past severe bouts of arrhythmia and make them more bearable.

Brian and the rest of you remain in my prayers. And may God continue to bless you with people such as the surgeon and the transplant coordinator.
 
when Chuck, my son, was little, he had several surgeries before he was six. in order to help him relax, I would ask him to relax his toes, then his foot and travel up the body one section at a time. I don't know if it helped him or not, but it helped me to think maybe I was helping him a little bit.

It's really nice that Brian's friends came to see him and that he could play some.

You are being so strong and we can only hope things will improve today or tomorrow or soon. Thank goodness for the dear doctor who sat down with you to reassure.

Blessins...........
 
Deanne,
It's almost 8:00 pacific time on Monday. I have been checking in as often as possible to follow how Brian is doing. I have agonized over some of the things the doctors have said and wanted to choke that nephrologist. I hope that the plans for treating Brian prove positive and that he starts to get a good grip on recovery. I also believe visualizations are good. Maybe you could bring some pictures in for Brian of better times when he was out doing something that made his truly happy. I keep a picture of a vacation spot on my office wall and when things are going in a bad direction, just looking at that picture helps me to get my self back into a better frame of mind and gives my soul some peace. I am still praying truly hard and you and your family are never far from my thoughts.
 
I'm sure Deanne will be on to post - but this is her most recent from Facebook:

praise god. we have an answer. his renal artery occluded again. used a balloon to open it up and he'll get temp dialysis should feel better by tomorrow
 
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