There's no big difference in his condition, so don't let this next part freak you out...
...dh and I are starting to talk about end of life and "heroic measure" issues. We almost lost James (we might still) this week, and earlier this year we almost lost his twin brother Ian. I guess we should have talked about it then, but we didn't. Now, having two kids that were close to death, we're starting to realize that we need to think about these things.
I should say upfront that I don't want to be hassled about my opinions on this stuff. I'm not worried about SN moms here, but if someone is coming in and reading this from a non-SN parenting perspective I really don't want to argue about it. I'm officially asking for SUPPORT ONLY. This is just too damn much to deal with to argue about it with someone who hasn't been in our shoes.
Sorry. Feeling touchy.
Anyway, I guess we're thinking about how far we want to push things. It seems like doctors will always push if there's any hope of life left, and dh and I believe strongly that that's not what we want for our boys. For kiddos like ours, happiness and quality of life are really important. We're not sure how oxygen deprived his brain was...probably not very, but the neuro said the brain is showing "signs of irritation" in some areas on the EEG. It's getting better over time, but she wasn't all sunshine like she was on Wednesday night. She was talking months of recovery to get back to his "baseline," if indeed that's possible. She was also giving us the heads up on what mild, moderate, and severe impairment would be like (I asked).
Anyway, what has happened is done, and we can't go back. We're still praying for the best. I guess I'm thinking more about what could come. His heart is impaired, it always was and always will be. It's very weak from what he's gone through. If he codes again, what do we do???? He's severely cognitively delayed, he can't tell us anything, but a strong part of me says we should listen to his little body if it's saying repeatedly that it wants to give up.
Why would I push to save him? We don't want to push so hard that the quality of his life will be severely compromised. We don't want to push so hard because we're afraid of saying "stop." We don't want to avoid making the decision to stop simply because we're afraid of the guilt that will follow the "what if he could have recovered?" questions. I want to think for James, not for my own sense of fear and guilt.
Then again, I want to be sure that I _am_thinking for James, and not for some deep part of me that wants to be rid of the stress and strain of caring for him. When he coded in the emergency room, it was a good litmus test. My head was screaming "NONONONONONONO! This can't happen!"....there wasn't relief at all. None. There was resignation, though...a sort of "I feared this would happen. I guess today is the day it's going to happen." I don't think my deepdarkawful "wanting" him to be gone is much a part of my emotional decision-making.
I need to think these things through, because the truth is that both of our sons have very severe epilepsy and have had very frightening seizures (life threatening ones) already by age 5. I've known on some level, for a long time, that they probably will die well before dh and I do. I guess I didn't face the messiness of the process, though....I sort of assumed that it would happen in an obvious way. They'd have a severe seizure when they were asleep and not wake up. Or we'd have them in the ER and things would be so obviously bad that we'd discontinue heroic measures because there was little to no chance of meaningful recovery.
But what if there's a 20% or 40% chance? That's what I'm starting to process. There might come a time when we need to make that call. I can't keep sticking my head in the sand and pretending that the choice will be made for us (sleep) or that the choice will be guilt-free (no chance of recovery). If there's a moderate chance of recovery, but then a much larger chance of severe brain damage and impairment, then what? Can I let go of the fear and guilt and discontinue assistance? Is that the right thing to do? My heart says yes, that I know and love James and I know what he would want....but it's frightening to face.
They've just started warming him and taking him off the paralytic. Over the next several days they'll wean him off the sedatives and the breathing machine. The neuro said it may take weeks to get him back to any kind of baseline.
I can't believe this is happening. This
, and this
was James just a week a go or so. This
is James today. I'm so angry. I mean, I'm handling it well, but I just *-ing hate what this disease is doing to my children and my family. My poor, dear, sweet, gentle James.
Thanks for letting me get this out. Dh and I have been talking about it, but it's hard to talk about with friends (gumby, I hope you don't mind). People think things like "they're just traumatized" or "they're just being pessimistic," but that's not it at all. We've almost lost two of our children this year. It's like living in a gdamn war zone right here in the middle of suburbia. We never know when something completely out of control is going to swoop in and take our children. Friends of mine that don't have SN kids, or don't have severely SN kids, have tried to say "well, it's like that for all parents. you never know what will happen." NO, it's not the same. You don't have to think about end-of-life issues, or almost certianly outliving your kids, or fearing a simple virus with normal kids. You don't spend weeks of your life in the ICU and count yourself lucky to have a few months go by without fear of losing your child.
It's just that I'm starting to get, really internalize, the fact that this is going to happen again. And probably more than once. How many times will they bring him back from the brink? And honestly, if we are so lucky to have our James back again this time, how many times are we going to play those odds? When his heart stops again in the future, or when Ian stops breathing again, how many times will we step in and "hope for the best?" How many times will we chip away at what our kids are, and the kind of happy life they lead? When can we say "this is enough."?
I don't know if anybody can answer that question but us. I just need to find some kind of answer for myself before I'm faced with the situation.