I am so proud of this girl. When I think of what she has been through the last 3 months, I realize how incredible she has been at handling whatever has come her way. She has been in the hospital for so long now that she has learned the ropes. When the blood pressure cuff deflates after taking her blood pressure she now announces to the nurse “ALL DONE!” and points at her leg. When it’s diaper change time she likes to stuff the cotton balls in her diaper that they place there for her urine tests, and when the respiratory therapist comes to do her breathing treatment she no longer fights the mask, she just holds my hand and gets very still. I am so moved by her strength and her motivation.
She had a great time with her Daddy this morning, went to color in the playroom, rode her wagon down the hall and did lots of visiting. We had a small episode where her ddavp shot didn’t work and her sodium shot up when her body let go of all that fluid at once, so we scrambled to get her another shot and get some fluids on board. Managing Phoebe’s fluids is a full time job and somewhere along the line I have become very adept at how to manage Diabetes Insipidus, intake vs. output, specific gravity tests and how to detect dehydration. I have learned more medical terminology in the last 3 months than I ever knew before. I’m told cancer-kid parents become experts in their child’s specific type of cancer, chemo protocols and care. I have met parents in these halls who have been doing this for three years. The marathon.
I try to remind myself of the marathon when I’m too stressed to eat or when I’m skipping important things in a rush to get back to the hospital. This is our life, and it will be this way at least for a long season. I can’t rush through this rough patch and buckle down until it’s over, that’s no way to live for an extended period of time. I need discernment in how to pace myself. So, here’s to the marathon…
I don’t have any news about being released to go home. Phoebe’s sodium is of course still the issue, so we are still hoping to see those levels regulate without so much maintenance. Well, the Phoebster is asking for Backyardigans, so I’m off. We are so grateful for the improvements we are seeing in her!
Thank you all for praying, ~Amey