Basically nothing has changed. It's so hard to go there every morning with hopes that progress will be made and feel like all I do all day is battle it out with the nurse as to WHY more isn't being done. I am thankful nothing has gotten worse but this experience is just brutal.
Nephrologist seemed very happy and thought Bruce had made a lot of progress ? He didn't see any reason why he couldn't be taken off breathing machine but not his call. He said epogen should not have been cause because cases with seizures are if the hemoglobin levels changed to quickly and he said he looked at this first thing and did not see that in his blood tests. He continues to say there is nothing in blood work related to kidney or dialysis issue to cause a seizure. Neurologist said MRI was normal, wanted to do a second MRA to check smaller vessels in brain just to make sure nothing wrong but she said possible to never know why the seizure happened. She saw nothing wrong with him, thought he had improved in the past day and did some mental tests with him where he pointed to answers. She also said didn't see why still needed ventilator. So WHY IS HE STILL ON IT? It is up to the critical care specialist who I asked to speak to but never saw today. I have heard at least 10 times they would start to "wean" him off the machine, but that has not happened.
I guess tomorrow I am going to have to get pissy about it if they don't do something. I really think it's all in the nurse - the first days we had ones that were proactive. They thought of things and called doctors to approve and did them. Today and yesterday we had ones that just followed orders and did nothing else even though she knew that his mother and I were very concerned about moving this breathing issue along.
They have him on 3 meds for sedating now that have him much calmer. And it is less than he was given before so it was just finding the right combination. He wrote short sentences on paper to me today (even though he's that medicated), which is a great sign, but he keeps waking up in total panics. I tell him why he's there and 5 min later he wakes up in complete panic and asks the same questions again. He asked some really heartbreaking things that make me know he is so scared and confused. Apparently one of the drugs is known to give amnesia so this is going to continue until they get him breathing all on his own. It's so hard to take. I feel bad that I'm not there to calm him down but sometimes i think seeing me makes it worse.
Thanks for all the messages! I know everyone wants updates on how he is doing so I am making time to try to keep this blog updated. I hope to have better news tomorrow.
1 year ago