I spoke with the kidspath nurse last night and expressed, yet again, our general distress at Abby's level of pain. We all agree that she is getting heavy duty pain meds and should not be in as much pain as she is. It seems certainly related to her stomach more than the spine at this point. We hear her stomach gurgle and she screams in pain. Usually mornings are ok. She always has pain, but not as severe. Every afternoon is terrible. It almost feels like all the meds are dulling Abby, not her pain.
I dread getting up in the morning. I don't know how to help her. I'm stressed and snappy with Jeff and the girls. I'm not proud of that, just honest. I don't really have time to think about anything. We just keep trying to get through each moment.
Jeff has a few days off, and we hope to spend some quality time with all the girls. Today, the pain team added another Fentanyl patch and a pain med that works slightly differently. She still has Morphine if she needs it too. Her GI Dr. is setting up a consult for a possible celiac plexus nerve block. It would be outpatient through interventional radiology, but likely to provide the most consistent relief. We aren't sure how quickly that could happen, but obviously if it would help, I hope it would be soon.
She seems tired the last few days, which is completely understandable. Her favorite spot is lying directly on me. That's perfectly fine.
I think we are making some progress with her, it's just so slow. She has been home a week today, but it seems like much longer.
I can't say how thankful I am for all of the prayers and support we are receiving. There are cards in the mail everyday, and messages letting us know we are loved. It means everything to have so many wonderful people in our lives. Thanks for standing with us and loving my girl. We love you too <3
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