I am working on a Sarah post, which I really want to get to, but there's so much going on. Her birthday was yesterday, and we celebrated, but it wasn't the same. Abby has been in a lot of pain this week. Managing it with what I have available has been impossible. I was so distracted, I burned/caught on fire, Sarah's dinner, the awful puppy grabbed almost a whole pack of bacon off the counter and ate it raw :(, and I messed up the cake. In the end it all turned out fine, but what a temporary mess it was!
KidsPath came out Tuesday, and I made it through two hours of talking about all of it. Advanced directives, end of life care, and pain management. They were wonderful, but it still doesn't seem real. I feel like my head is doing what needs to be done, but the rest of me still hopes for my child the same way I have her whole life. In a way, that's good because she's here. The last thing I want is for people to begin burying her. She's here and she's still herself, just sick.
The team met about her and spoke with her pediatrician yesterday. They all decided it was best to start some Morphine to get her pain under control, and then she'll switch to a Fentanyl patch. We started Ativan for anxiety, sleep, and they said it can help with nausea too. The nurse comes this morning for the first Morphine dose. The only reason I'm not upset about all of this is that she hurts. She is in pain and I can't stand that.
They ordered a hospital bed with a pressure mattress. I think it will help--at least I hope it will. It's returnable, so that's okay. I'm following their lead in all of this. They've done it all before and I am learning as I go.
I'm wondering if today turns her in a way she doesn't turn back from. Does starting heavy pain meds signal the beginning of the end, or does it give her little body enough relief to actually heal some? Most of the time I want it to be over for her. I want her suffering to end, but over is over. No take backs. For me, I want her here. For her, I dream of heaven.
I was looking through pictures yesterday thinking about what a cute kid she was/is. I have to scan some pictures this week. We used to fill metal bowls with all sorts of sensory items, like bead strings, crinkle paper, and small toys. We would put them on her walker tray where she would systematically work each one out until she managed to get it all on the floor. She'd pull most out with her teeth, and grin with it hanging out of her mouth. We would pick them all back up, and start again. She loved it! So did I.
Time to move through this day, and let what will be, be. Please pray for us to quickly find the right med combo for her. The nurse said when they first begin the meds they often sleep a few days because she will finally have some relief, then they adjust and wake more. I need to remember that and not panic the next few days!
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