In the News again Tennesse this time!

Bruce's brother Sean was in the news in Nashville. They did the same kind of story like they did here about them both needing kidneys. Here is the link: http://www.wsmv.com/video/21047012/

I'm pretty sad after seeing that so not much into reviewing the day since there is nothing too good to report as far as progress to get out of ICU. His blood pressure is still high. They have him on everything that worked in the past before he started dialysis when it was at it's worst. They have tried many many drugs and nothing is working so far. Before this incident he was only on one -Coreg. He got sick last night but was able to have solids today and did well so far as about 8:30pm. They got him up out of bed and he is very weak and unsteady. Almost worse than when he had the nephrectomy surgery. This whole thing seems worse than that... a seizure! Hard to believe.

There was an incident last night where he woke up and thought someone was after him or something (i did not ask much about it) so he was trying to get out of bed and he was pulling out lines, etc. He does not remember much. Freaked out the nurses pretty bad, so they really got on the CPAP machine today. Three specialists were in the room about it and he's trying it tonight. They think he is not getting enough oxygen when he's sleeping (duh!) and waking up confused.

I agree that he has sleep apnea but it has never been an issue to cause problems. Before he had his kidneys removed he always slept well was not tired during day and has never woken up confused. If it will help him in the hospital I am all for it, but in order to get one at home he has to go do a sleep study and go through insurance to get it at home. We went through this about 5 years ago and they said he was borderline apnea. We got the machine but he would throw off mask in middle of night and when we found out it was coming out of our deductible and costing $400 a month, we sent it back. We will try it again I'm sure. Once again, no one seems to worry about the fact that he was not sleeping AT ALL.

He told me that the poster I made has helped him many times when he wakes up because he knows "amy has been here and she knows i'm here". There is also a white board with where he is at and the date and my phone #. None of this seemed to matter last night, he said he doesn't remember even seeing anything it was like a dream. I explained to nurse how this happened last time when the narcotics just linger for more than a week and he gets confused. I had to work so I only got to be there for an hour this afternoon. His parents spent most of the day before me, but they left today to go back home so he will be more on his own which makes me worry more than before. If he was mentally clear I would not care at all.

Tonight lets just hope he stays in bed, sleeps with lots of oxygen and wakes alert. No incidents please!


  1. I was going to suggest the c-pap machine for the apnea. My husband uses it. There are many mechanisms for keeping it in place and the mask should be custom fitted to his face. Many drugs can leave that amnesiac state afterward (including ambien). It may also have something to do with the high BP causing hypertensive encephalopathy. Glad the notepads have been at least of some help part of the time. Next suggestion, try making a brief tape of your voice saying some re-orienting things in a brief concise manner. Played loudly just the sound of your voice may pull him back into reality. It is worth a try. If the apnea is at the root of this confusion, then the blood gas numbers should easily tell the tale. Is his hemoglobin okay? What is the BUN? Finally, despite their reticence (but in the absence of any other explanation) have they at least done a plasma and bone aluminum level? When they have no real answer they should be willing to look at the more obscure possibilities. All are always in my thoughts.

  2. Amy,
    I know it may not help, but we got a little recognition and a local group wants an organ donation person to speak at an event in October about the importance and such. Although, I don't know if it will directly impact you, we certainly hope it will. I will keep you posted. You've done some good things to help him when he's lost. Keep up the good work.
    Mary & Sean