Yes, we could go get Charlie a PICC line and keep her fed and hydrated since her digestive system appears to be shutting down, or at least slowing enough not to support her anymore. We CAN get her a trach and vent and maybe keep her sats up that way (since oxygen alone doesn't cut it apparently). We CAN try 10 different seizure meds and maybe one will be somewhat effective against....whatever it is she's battling. The problem is, there's a reason her body is shutting down. She's trying to die. We CAN intervene and keep her alive a little longer, but from what I can gather, she's not expected to live that much longer anyway, even with every possible intervention. We're looking at a few years AT BEST. That's not factoring in the jerking she's having. We don't even know what it is or what it's doing to her body or if it's speeding up the process. It certainly seems to be affecting her. Or maybe the jerking is secondary to her body shutting down. We don't know. There are a lot of kids out there like Charlie (CP, dysphagia, seizures, ect) who live into their 20's, and sometimes even longer. But Charlie has problems they don't have. She has everyone baffled and every doctor who sees her says, "This is not just CP." It's not just a disability. It's not "just add a g-tube and put her in a wheelchair and she'll be fine". I WISH it were that easy.
So even if we could have her with us a little while longer, why don't I want to do everything possible for that time? Well, because she's hurting. Most of her day she's either uncomfortable or in a lot of pain. She has very little time to simply be happy and enjoy life. I know I post a lot of smiley pictures of her. But that's the *very best* of Charlie. And I'm lucky to get a good snapshot like that once every few days. Which is why I post every. single. one. I know some people think they are doing their kids favors by getting them the max amount of medical care and doing every possible intervention. At some point it becomes selfish. It's for the parent, not the child. If Charlie were not in pain and happy most of the time, I'd be doing more for her. Really, I would. I decided a long time ago that I wasn't going to be THAT parent...the one who puts their wants and needs before their child's best interest. The one who hangs on too tight when their child is suffering. The one who keeps them alive because they are afraid of losing them, or goodness forbid, the social security check, which I've heard of people doing.
It's tough to say, "I'm okay letting my child die." Really, it's very scary. And heartbreaking. But once I got to the point that I went to bed every night and hoped that THIS would be the night she'd pass peacefully in her sleep, I knew it was time to stop intervening. We are keeping her jerking under control as well as we can, with narcotics and other meds that help her sleep. She's already been on a lot of the seizure meds that are supposed to help with the myoclonus...none of them have worked. We can keep trying more, but chances are, they might work for a bit, but then stop working. The side effects to a lot of them are horrendous and would be too much for her to handle anyway. We have fentynol aerosols available in case she has a hard time breathing. We will continue to feed her at a rate she can handle, so she doesn't feel hungry.
This is all I plan to do. And just love her as much as I can right now. I'm sorry if this is upsetting to anyone. I'm sorry if anyone feels like I'm giving up on her. Until you see her suffer everyday, you just can't know what it's like to have to make these decisions.
Having a good ol' time with Grandma. Her favorite book has babies dressed in a different color on every page and she just LOVES it when Grandma reads it to her. She just doesn't respond like that when anyone else reads it. LOL She gets excited as soon as she sees the book.