We got Cipro into M combined with increasing his airway clearance and his rescue inhaler. His oxygen levels are now holding in the low 90s again. Yesterday, in tyical cystic fashion, he puked/coughed up about a third of a cup of nasty mucous. He's been able to move stuff along when he coughs since that point.
I can actually handle the well intentiond inquiries into how M is doing. It's the denial that I cannot handle. Those who insist that M will be healed, that every crisis averted means he somehow lives. Those who question my faith because I am coming to the point of acceptance in knowing my ten year old son will die before he turns eleven.
Really? Pray for us, offer good thoughts to the universe, ask us how we're doing, anything well intentioned and done with a compassionate heart I can tolerate. Just don't tell me he's going to make it. Especially don't demand to know why we're not chomping at the bit to hike hours away to the only medical center that does multi-viseral transplants. Even IF there were good odds that you can get a liver, small bowel AND lung transplant for a pediatric case, if still wouldn't help M qualify based upon his low IQ, his profound autism, and his Bipolar diagnosis. Even IF organ transplants were an option, I can't even get him to voluntarily swollow his digestive enzymes anymore. I don't see him tolerating the months of extremely intensive and invasive procedures it would take to get him into a transplant program, much less survive the afterward life of having replaced a large portion of his organs.
We choose to not seek organ transplant for M. It was the compassionate and loving option to give this child. His poor body has been through more torture and pain than most of us will ever experience in a lifetime. It was one gift of peace we had left to offer him, and one we willingly give to him.
So today, we have averted another medical crisis. I truly thought he might die this time. He came pretty darn close. However, we propped him up to live another day. That doesn't mean it's over and we rejoice. It means we live and wait for the next crisis, having to decide yet again how much is compassionate and how much is too much response. When do we let go, how do we let go. Above all, how do we protect him and his siblings.
This is not over. We are not through the challenge. Living is just as much torture for M as dying is. Being through the crisis means that M goes back to his daily living. It's not much of a life anymore. He will no longer eat or drink thus we must plug him into his g-tube four times a day. He must sit while we wait for the formula to go into his stomach because if we let him put it in the backpack, as we used to, he will take it apart and feed the ground to prevent the calories to enter his body. His body struggles to digest food now. So, after he eats he desperately wants to sleep. However, he fights food constantly. You cannot simly put him in his room to sleep. You have to determine how long after a feeding will it take for the bulk of the formula to leave his stomach. If you put him to bed too soon, he will promtly vomit the entire feed all over his bedroom floor.
He refuses to take his meds 90% of the time now. This means you must force them down his throat in the same manner you force a dog or cat to swallow pills. You push down on his lower jaw to open his mouth, put the meds into the back of the throat quickly, hold his jaw closed and sit there until he cooperates enough to swallow them. Frequently, you have to hold his jaw closed afterward because he will attempt to puke up his meds. Occasionally, he succeeds and you have to fish the truly important pills out of the vomit and start over.
He will no longer eat or drink but he's obssessed with water. His newest trick is that any glass of water you actually give him, he will dump onto the floor. Yet, he spends his day hunting water as if he is dying from parch, guzzling random glasses of unidentifiable liquid that don't belong to him, even drinking from the toilet if someone does not esort him and supervise him in there. It's bizarre and never-ending. His hospice aide is getting extremely frazzled by how this behavior is escalating now. She's never seen anything like this. She takes a glass of fresh water in every morning for him, and every morning she has to fight him out of the toilet instead. I'm just grateful that after years of doing it all alone she hangs in here even as his behaviors continue to escalate.
The first time he deliberately puked on his new teacher's materials, she was stunned. She had never experienced that before. Now, she recognizes the signs he's about to start and grabs her supplies and is done with schooling before he can get it up. School is still a huge motivator for him. About 60% of the time, he will choose to not vomit when he knows it will cost him school. Notice I said 60% of the time. That's good compliance for him now. The rest of the time, he will induce vomiting with vigor.
He has lost his potty training entirely. I finally put him back in pull-ups when he pooped all across the living room in retaliation because I would not let him go swimming with his siblings. They swim in a pond. It's not a safe place for him to swim, even if he were still physically able TO swim, and he's not. I decided the pull-ups would be more merciful for the rest of us. They contain most of the poop so we don't have it dripping all over our house. It doesn't contain it all, but it helps.
M has lost most of his words. He doesn't seem to remember how to speak when struggling with the slighest discontent anymore. He also has no concept of boundaries between him and others. Someone looks at him funny from across the room and he screams bloody murder and claims they are beating him. His autism is becoming more pronounced and not less now. He is forgetting how to navigate and interact with the world around him. He displays less of the anger he carried for so many years. Now, he's just lost and confused most of the time.
Added to this is his medical struggles. He hurts. He cannot tell me where or how, but he hurts. It hurts to breath. It hurts to cough. It hurts to be awake. It hurts to sleep. We give him Tramadol, one of the rare narcotics that does not shut down the gut so we can reduce the risk of a bowel obstruction. It relieves some of his pain, but it also causes symptoms of a physical addiction. I believe this is the primary cause that when M has enough oxygen and energy, he tends to fall back into raging and attacking us. Violence that we used to see every 6-8 weeks we see every other week or so now. We have regular psychiatric medications for him. We have overdosing protocals for emergencies. We have emergency psychiatric medications when those fail us. Then, we have big guns when we're faced with either controlling his raging....or heading to the Psychiatric hospital with him. Dying must hurt a great deal. For M, it is also terribly confusing and frightening. I use his anti-anxiety medications most liberally of all. I have a run of the mill anti-anxiety med he takes three times per day (and extra if necessary). I then have a big gun anti-anxiety med that he takes every night before bed and at least every third day during the day as well. When he starts to crash, it is not uncommon to give him that medication twice during the day.
I completely understand the need for a Palliative Care program. Not only do we need someone who can balance all of the struggles M faces as he journeys to the end, but we need a program where medications that ordinarily would be unheard of can be administered to comfort him and calm him.
M is dying. There is no stopping this process. That isn't even the focus of our choices anymore. Every day, we watch M be tortured by living. We comfort his siblings, coordinate their therapies for living through this. We manage his medical issues, do everything we can to calm him and comfort him. We ask ourselves how to proceed every day in a manner that honors what is left in M to stay alive, and in a manner that does not traumatize him nor his siblings more than necessary. Some days, we contemplate simply giving up. We could do that. No one would blame us. We could sign DNR orders, remove all life saving measures and wait for death. He would be gone within one month, without question. Certainly, Hospice wanted us to take this route when we got here. We could give up.
We strongly feel that some things we could do to give up would cause M pain and suffering. Anything that doesn't protect his lungs and fight for his ability to breath is worse than the torture of daily living is to him. We are very protective of fighting to keep his lungs functioning. We are less aggressive on his liver. Yet, so far, if we insist upon protecting his lungs, his liver holds on to fight another day. Until his liver stops fighting, we keep fighting. We know the final outcome of this journey. We just have to get there with the least torture for M and his siblings.
Today, we averted another crisis. We supported his lungs, moved the concrete-like mucous out and got him breathing again. We brought him back to his torture of daily instead. We live to the next crisis point again. This time, we have prepared and thought out. The next crisis is when we must tell M that he is dying. When that happens, he may give up living. We have to be prepared to let him go if that is the right thing to do. I'm not certain I am ready. I know we made it through this weekend. It apears we'll make it through this week and next week we will throw hard-core antibiotics at his lungs via his veins again. That will support his lungs for awhile, which will hold the crisis situation at bay again for awhile. It will come again. Each time, it becomes harder to respond, harder to keep him comfortable, harder to know what the right choice is, and harder to bring his health back to stable.