We met with Dr. Russo in his office today. He is thinking the seizure was caused by the Ambien. He said his first assumption would be medicine because there is nothing in his record to show other reason and a seizure is not a common thing for someone in Bruce's condition. He mentioned the fact that Ambien works on the brain. He looked and did not find documented side effects of a seizure, as did the ER doctor, but I believe there are many factors in play with Bruce and that is what caused it - I have always believed that. The sleep deprivation reached it's worse right before the seizure, he continued to take the Ambien even though it wasn't working, and he had dialysis on Friday but not on Sat or Sunday. Then monday morning, his brain probably said enough is enough I can't take it anymore!
He said that Bruce has such large muscle mass makes it harder to clear all the toxins in hemodialysis, so that is why the drugs stay with him for so long. He is still not himself in so many ways. He is much better than in hospital when he was confused about everything. It's very hard for me to deal with because one minute he seems fine then the next I am questioning whether there is something seriously wrong and he's headed toward a seizure or something worse. I think this weekend was just bad (like most are) because he goes without dialysis on one day. He had dialysis tonight so I really hope tomorrow is better and maybe by the weekend he will be out of the "fog". Dr. Russo increased the liquid they are taking off of him which can be hard on his body but it is what he needs to recover. He has muscle aches all over his whole body which has never happened before so he can move even less than after the Nephrectomy surgery.
The high blood pressure seems completely under control now and he is even taking less than what his hospital discharge papers ordered. He is supposed to watch it closely and take it at home. He has been doing that but unless he writes the numbers down he can't remember. I am making a medicine list to post in bathroom tomorrow because it has gotten too complex since we have the same meds from the past with different directions and milligrams. He's gone on and off about 20 drugs in the past year. Every time we get it organized it all gets changed again. That doesn't even include the ones for occasion use.
Next Monday he sees the Neurologist to get approval (we hope) to drive, and get approved to go back on the UNOS donor list. This is my Neurologist and I have already given him heads up on everything so he will address the sleep problems, restless legs, etc.
We had Roan's 4th birthday party on Saturday. It was the first normal thing that has happened in awhile around here. I know this is getting to the boys but I am doing the best I can to keep things calm. I have always made their lives about routine and they both do not deal well when that is disrupted for long periods of time. All I can say is THANK GOD for my mom and dad!!! I know I would not make it without them. Beck and Roan think getting to be with them is like party time no matter what so that helps when they know things are not well with their dad. Trying to explain why he was in hospital again for so long was a tough one.
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Glad things are better. I follow your blog everyday and pray for all of you as do many of my friends and family. Post-transplant was confusing with all the meds and the need to keep track of any changes in vitals. I made a blank spreadsheet to fill in every morning and evening: temperature, weight and blood pressure. All that becomes a written record. mymedschedule.com is an excellent FREE resource for tracking med's.
ReplyDeleteWow, that is a great idea posted by David. Bruce works with computers anyway so a spread sheet is a great idea. I am less tech oriented so had thought of a large dry erase board, easy to see and easy to "erase" and make changes as needed. Whatever works. Generalized muscle aches etc still sounds like build up of something. Expect they have been checking levels of electrolytes and perhaps for lactic acid build-up???
ReplyDeleteHopefully this seizure is a thing of the past and there is no recurrence. You haven't mentioned whether Bruce is sleeping well yet or not.
Nice resource David. Now if only I'll remember it when I need it-lol.
ReplyDeletethanks for the info David. I am making my own spreadsheet now for him. It's a great idea. We had one at home when he was on PD and he filled it out every day and reported it to the nurses. Now when he goes to the center I have no clue what is happening and when he's out of sorts like he is now, he can't remember.
ReplyDeleteThis is post to Jan...I went over all the info you have posted about possible causes and Dr. Russo really thought the high blood pressure was not the issue because it was never very high and staying there and Bruce had no other symptoms. He tends to get a headache if it gets high at all and that was not happening. It just started getting higher while he was in the ICU which tends to happen to him midway through all his hospital stays, then he comes home and it evens out. He looked at the blood work and didn't see anything else out of ordinary. He says he's just very uremic now and needs better dialysis. I really appreciate all your help and prayers for Bruce. I feel alone and like I'm fighting a battle every day so thanks for your support.
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