Been a while.

[Pandora]

Bran has been very very sick. He has been in the hospital with kidney stones, UTI, and a kidney infection. They put in a stint, but can't remove the stone yet. Found he was septic. I almost lost him. I check everything that come out of him. Pee, poo, snot (you guys know we gotta be careful) I don't know how I missed it. He didn't say anything was hurting him. But one morning pee and it was like coffee, so off we went.They sent us home after 5 days, and the day after he was just in pain, so we went back to the ER. 12 hours later we are now home again. He has a cath now, (great more work for me, lol) He is in so much pain at the moment, the stint is just really giving him trouble. But they will not do anything to remove it or the stone, cuz of him being spetic. There is nothing I can do to help him. He hurts, he cries, he is uncomfy all the time. All I can do tell him I know, and I'm sorry. Helpless. I would take his pain if I was able, even if it was just for a day, I swear I would. My friendtold me today, when one door closes, the Lord will open a window ... is that for me to jump out of I ask. (lol) I am so worried that I'm gonna mess up or not do something right, and I will be the cause of his hurt. Guess that line of thinking will not get us anywhere. Keep on Keeping on. It works if ya work it, Calgon take me away. All great sayings, but I think today, I would love to hear ..... BUD....WISE....ERRRR.

 

[michael0314]

You've got your hands full! and still keep a sense of humor I hope the people around me can do that when the time comes that I need a smile or laugh. Bless you

 

[Miss]

I am so sorry Bran is going through all of this! You, too!

 

[Ms. Pie]

God bless you Pandora. I hope you have someone close that can help!

I wish Brian a quick relief from pain. It sounds awful! This is not your fault in any way. Please know that. There is only so much you can do, you can only be as careful as you can. You are not to blame!

{{{{BIG SISTERLY HUGS}}}}

 

[HelenL]

Pandora, I don't know what to say, we can only pray that the pain (and hopefully the stone) will pass soon and give him some relief. It's good that you posted because extra prayers can only help, and it's good to vent (and to keep your sense of humor through all the frustration).

Just remember if you're gonna jump out that window the Lord opens, to make sure its on the first floor, and there's a mattress underneath it.

 

[notme]

They can't do the treatment that breaks up stones? It's sort of like a shock wave that helps break them. I've had kidney stones twice--the only thing more painful was labor. I hope they have him on some strong pain meds.

Did they send you home with a strainer to use to see if the stones pass? They are so much worse for men (more area to pass through, ouch!)

I'm glad they've treated the sepsis well enough for him to come home. He must be just miserable It takes pretty strong pain medication to help with the pain. It's possible he'll need to go just for pain management if he's in enough pain at home to be in tears. can they set him up with a pain pump at home?

 

[soonerd]

I have had als for over 5 yrs now and was slightly impacted in the hospital after I had my trach done. I see my wife struggling at times. I really can't say I know what your going through. If brian has a good diet you might try some physical theropy if you've done that try more water and less soda less coffee even through the tube. Soda breaks muscle down. I have a slow progression but had to change things too. If you go to the hospital again hydrate if you do anything hydrate. Also since starting pt I have went from 2 or 3 bile movements a week to at least 5. At the hospital they literally had to pull some out needless to say it was a pain in the ass lol. Just try to have some time apart but go see a movie however possible. Last friday we seen x-men. There is a als center at 922 moreen road Durham NC Dr. Richard Bedlack, Candice and the multidisciplinary staff are the real deal just great people. If you don't live near and you are ever in a situation to move near do it. I wish you well in everything.

 

[brooksea]

Man, I don't know how you are dealing with that! Any in-home nursing care? It sounds like he's in too much pain! I like pain pump suggestion!

Try to take care of yourself, as well!

 

[Zaphoon]

I just want to thank you for being there for him! Thank you for checking all of those aforementioned fluids and substances! You catching the coffee-like urine was very good! I'd say you are doing more good than you know!

Thank you for all you are doing for Bran.

 

[Pandora]

Update:

Bran is back in the hospital. His stint was just too much for him to bare at home. They are keeping him as comfy as they can. He hates the hospital, but it's where he needs to be at the moment. A call from the specialist we have been seening came today, his tests are in, and the pregression is so rapid, that he told me he will not be able to speak in 4-5 months, and he probley has a year left. I know that he went to Med school and I respect that, but I REFUSE to live like that. There is not a experation date on him anywhere, I know I've looked. He's my rock, and I will do anything in my power to make what ever he has left comfy, and full of respect and joy. Thankyou for all the well wishes you guys are very special to me, and not sure what I would have done with out this place.

 

[Ms. Pie]

I love your style Pandora Dear! Dr.s don't know as much as they'd like us to think they do...Bless their hearts. I love my Neuro but he's not the type to be a blow hard. AND he has MS which I didn't know until after our first meeting!

Anyway Pan, you're the best. I admire you tremendously.

Love,

Marta

 

[notme]

I'm glad they are keeping him comfortable. Pain is easier to treat when it's severe in a hospital with the pain pumps and/or injections. Pills just don't work as well.

I like the 'no expiration date'--someone has that in their signature line on here...can't remember who.