Today was the best day so far. Blood pressure remained too high, but by evening I believe they finally got it under control. He made it all day on liquid diet without getting sick. He is starving but they won't give him anything solid until tomorrow.
He is mentally not quite with it yet. Had I not seen this before when he had his surgery I would be very worried that something was wrong, but last time it took at least a week for the drugs to be all out of his system. He can remember such details about things but then totally blank out on something that happened earlier in the day. He has seen the same Nephrologist everyday since he got there and I don't expect him to remember last week but he has had no drugs at all since friday night and he can't remember seeing this doctor yesterday or today. They had long conversations together both days too. He also says things that make absolutely no sense. I know it just takes him longer to get to normal because of the lack of kidneys and I know he's had every brain test in existence. It's just not great knowing that I have to work next week and can't be there to speak to the doctors when they visit because there is no telling what he will say or remember.
I'm very curious to see if they end up discharging him without addressing what made him have the seizure. They ruled out everything but no one has even entertained the idea that it was lack of sleep (maybe combined with the Ambien). This was complete sleep deprivation not just some trouble sleeping. I made a post last weekend about how I had never seen anything like it. I knew the moment I got the phone call that he was in ER with seizure that was the reason and I said so as soon as I got there. The most response I have gotten is that it "could be a contributing factor". This has to be taken care of or he will go home and the same thing will happen. I know we can meet with Dr. Russo and discuss this but I will be amazed if they let him leave hospital without even trying to do something about it. I have numerous links bookmarked about hemodialysis patients and insomnia, restless leg syndrome and links that sleep deprivation alone can cause a seizure in someone who has never had one. I am ready!!!
Easter Everyday
8 years ago
Posts
i am just now catching up with you after not reading since all this started. i am so sorry you guys have to go through this. i will say more and more prayers for you to get through this and to get bruce out of the hospital. lots of hugs to you!
ReplyDeleteforgot to mention he is still in ICU. Hopefully will get moved to room tomorrow and MAYBE home on tuesday. But we all know things are very slow there so my guess is Wednesday if things continue to improve the way they did today. Roan turns 4 on Tuesday so I wish he could come home then!
ReplyDeleteOf course you are armed and ready! Unfortunately, we have to be our own advocates in health care. Of course doctors cannot know it all, but do not be discounted so quickly would be nice. And from the "behavioral" side of medicine; YES sleep deprivation can cause all kinds of things!!!
ReplyDeleteAmy, I know it is hard not to be there, but please consider a couple of things. Keep a steno pad at the bedside with the date and any questions or info you want to communicate to the drs. for that day with space for them to answer. I realize they are busy but communicating with you should be a priority especially since Bruce does not remember what they tell him.
ReplyDeleteSecondly keep another pad or small message board with a brief summary of the questions Bruce most often keeps asking you (because he forgets why he is there, etc). A few well thought out sentences that he can look at every time he is confused or forgetful can help to re-orient him. Also conclude the info with a sentence explaining that you are at work today but will be back in the evening. Understand your wishes re:the upcoming birthday, but better Bruce gets time needed to fully recover rather than having another problem on Roan's birthday. You keep saying his BP is way up again yet Drs don't think seizure was related to hypertensive encephalopathy???
Love the idea of notebooks! While filming the piece today, a gentleman came up and said he's praying for our family. He also told a story of a family member that had emergency transplant surgery after a routine check up. She was in the garage when her cell rang and told her to come back up they have a donor! It'll happen and he won't have to miss many more birthdays. Hugs
ReplyDelete