Last night, Brian was awake again... all night. He slept from around 10am to 2:30 or so on Saturday afternoon. Up all night Saturday night. He slept again on Sunday morning from 7:00 to 11:00. However, we did not give him any more of the Ativan/Lorazapan, so he is no longer having the jerking motions and hallucinations and sudden hanging-on-for-dear-life urges. So, when he is awake, it is a bit more peaceful.
We gave him some more Oxycodone to see if he would sleep again as that seemed to do the trick on Saturday morning. It did nothing. We have not tried the Haldol yet as we really would rather him sleep at night instead of during the day. We may try tonight if he does not sleep later.
Today, he ate almost nothing. Same thing yesterday. He is drinking about 20-40 ounces per day. He is outputting WAY more than that, so I am not really sure what that means. One thing that could be attributing to that, though, is that his shunt from his brain would be draining the excess spinal fluid into the body which eventually needs to be voided.
Last night, Sean, his brother, and I bathed him. It was challenging, but we got it done. Brian is pretty much totally unstable on his feet at all now. He could not stand without total support. He felt like he was falling a lot. I had to lift his feet to get him into position while Sean would move him to and from the commode to the bed and back. He lays very sideways in bed as his sense of balance is distorted, too.
His speech is pretty poor. His voice is quiet and he makes little sense. The beginning of the conversation is okay, but he trails off to something you cannot understand or cannot follow. He wants so much and tries to be a part of the conversation, though.
He has been vomiting quite a bit, too. It is definitely worse after he has been readjusted in bed or if he has been up and down (like after the bath.).
Brian needs constant supervision as he often tries to get out of bed. I don't think he would succeed as he lacks the strength, but he often states how he is going to go to the bathroom, to bed or to take a shower while pushing his covers to the side. We have determined that the night shift is exactly that, too - a watch and not a sleep session unless he starts to sleep again.
I slept the whole night through last night as Sean was here and I knew he would know exactly how to handle Brian. I was AMAZED this morning when Sean informed me that Brian did not sleep at all and talked the whole night through.
The boys are in St. Louis with relatives having a grand time. In their first afternoon/evening, they had a birthday party, an Easter egg hunt, a dance session on the driveway to Crazy Frog, a sidewalk chalk fest, cake, party favors and a game of Ghost in the Graveyard. Today they went to the City Museum, then played Light Sabers and swords outside this evening. My family is giving my kids exactly what we need right now while Brian's family is taking care of all our needs on the home front.
Doesn't this picture of the group celebrating life and birth with my boys melt your heart?
It does mine.
The only thing missing is their Mom and Dad. That breaks my heart.