Day 19

Rehab is going great. Leah is getting stronger every day. She is working incredibly hard, and I’m so proud of her.  Her BPAP and SmartVest System are scheduled to arrive this Wednesday. Tomorrow morning we have a meeting with the medical team to discuss future plans.

We were planning on Leah having her MRI this Thursday. Much to our surprise, the nurses showed up after her morning therapy sessions today and announced they were taking her to the MRI. A 2+ hour MRI isn’t just something you can spring on someone, let alone a twelve year old. When the nurse insisted it would only take 45 minutes, I knew the MRI order was incorrect, and I refused the MRI. Typically it’s the brain and the top of the spine with and without contrast. It had been scheduled for the brain only, with no contrast. Apparently, someone from the physiatry team ordered it, because Leah is inpatient under their care… without consulting her oncologist, I’m guessing- which is disturbing.

After the order was corrected, we were told the MRI would be tomorrow. We scheduled a time for her numbing patch, IV, and labs prior to the MRI. All of which wasn’t even on their radar for today. Then, as of 6:00 this evening, we were informed the MRI might be canceled do to cardiology monitoring her heart for 24 hours tomorrow. The best part is cardiology was supposed to see us today, but never showed up… and nobody even mentioned the 24 hour monitoring.

I’m definitely having a hard time with the lack of organization and communication. When the one thing I want to do is provide my daughter with the very best medical care possible, and these are the things going on around us, I’m left feeling very disappointed. Disappointed in them and disappointed in myself.

Trusting in the Lord to make our paths straight…

Please pray that the MRI shows healing, that the cardiology reports are normal, and for Leah’s continued strength and peace. 🙏

Also, check out Bonfire and St. Baldrick’s on Twitter. ❤️

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