When M feels okay, he wanders at night. After a fateful night when he wandered from his bedroom, the bathroom, the kitchen, in the laundry room in the basement and back again without my waking up, I realized that it was only by the grace of God that this child had not wandered out the front door and been lost Since that day, he sleeps with a baby gate in his doorway. As he has grown and gotten more advanced in his Houdini skills, II has built our own baby gates to contain him. We use that gate to both keep him safe at night and to have place to contain him when he rages. Some nights, M rages and screams all night and never sleeps. Other nights, he sleeps like the dead. Long before his current march to the end, we learned we had no choice but to carefully potty him and then sleep regardless of how he sleeps. Rarely is he up screaming all night, but about half the time he is dead to the world.
There was the night last fall when he had surgery scheduled in the morning when we got one hour of him not frantic. While II and he needed to leave for the hospital by 4:30, II ultimately got up and left at 2am simply to allow the rest of his to sleep. He spent the entire night screaming he was going to be late to the hospital and he HAD to go NOW. II got a little bit of rest at a rest area on the road and then listened to M scream in the car for nearly two hours in the hospital parking lot when they got there so insanely early.
So, there's little predicting what M will do at night, and when he is sleeping well, you are loathe to risk waking him. Since January, I've worked to come to peace with the reality that at some point he will simply not wake. Since the most likely way that M will die is from hepatic encephalopathy it means that at some point he will get tired and simply not wake up. That is far preferred to the lung exacerbations when he rages out of control because he cannot breathe and he is terrified. It's also better then possibility that he will have a sudden, unpredictable bleed and pour blood out of his body until he is dead.
I can only cheat death for so long. I can't even do that if I stay up every night listening for how M sleeps and trying to determine whether tonight is the night he dies. I've come to an impasse with death on these nights he is not doing well. I don't like it, but I take a melatonin, say a long prayer and then put myself to bed to wait and see what the morning brings. On the mornings afterward, unless I am greated by the normal M screams for the bathroom (typically said after he has confused his bedroom for such), I or II check on him before any of the kids get near his room.
Yesterday, M deteriorated throughout the day. His lungs were stable and healthy but his liver symptoms continued to escalate throughout the day. He was supposed to start his antibiotics that keep the ammonia levels under control on Sunday. Thus far, while he's shown signs of rising levels, he's made it to the scheduled start of these meds each time. Two days ago, he started inducing vomiting and starting the frentic bizarre behaviors that warn us that another crash is coming. Yesterday afternoon, he started rapid breathing. However, examining him showed me that his lungs were stable. By bedtime, the puking behaviors were out of control, he appeared to have a fever and his pulse was up to 142. I made the decision to start his antibiotics early.
We kept him in the living room for 30 minutes past giving him the meds, even though he was screaming he was tired and wanted to sleep. I knew there was a risk he would throw the meds up once he hit his room, but he had been screaming at the top of his lungs all day and I was beyond the ability to function with the screaming. So, we put him to bed. I immediately heard him retching. There was no point in checking for the meds. If I start pushing when he gets like this, he goes violent. Plus, as I said, I can only cheat death for so long. When I am fighting suicidal behaviors, I cannot fight death AND him.
So, I went to bed unsure if the antibiotics made it into his system and knowing that if they had not, then the ammonia would rise in the night and he would be beyond helping by morning.
Hospice doesn't understand why I fight in the first place. They would prefer I simply let death come. They seem incapable of understanding that M would not last a month without the fight I put into his care. I won't take extraordinary measures. I'm working hard to avoid more hospitalizations. However, I cannot justify not taking ordinary measures to prolong what little life M has left. I give him the meds, but I don't hold him and stop his raging all night so guarantee the meds can work. Thus, I didn't know if my son would be alive today.
He awoke me with the normal screaming behaviors for me to know he made it through the night again. His breathing and pulse are restablized this morning which tells me he didn't vomit his meds last night. Since its the weekend, we get to handle the lovely duty of cleaning him and the bedroom today.
Even my own children and nanny do not understand that I live with this daily reality now. People ask me how M is doing and I don't honestly know what to say. When he is not crashing, he is typical for M. When he is crashing, I lose sleep and I lay awake hoping it's a night that he is screaming and not sleeping well just so I know he is alive, but then have to question is it standard screaming or pain screaming that requires pain meds. Sometimes, those are very hard to distinquish. Dying is proving to be torture for him behaviorally. It tortures me to watch him live with this. Yet, this is my life in this season. I just don't talk about it much. I tend to see people backing away with big eyes if I do. Better to leave others to not walk the path I must walk these days.