Post BMT day 289
+289
Thank you for all the love and support surrounding Keira and our latest medical hurdle. And thank you for all the offers to connect us with your contacts! This tumor requires a very specialized surgeon and surgery and I’m happy to say that We have a plan!
We have had several phone calls with various surgeons and an extensive video visit with the neurosurgical team at Mayo in Jacksonville FL. The FL team has been an answer to prayer in every way. We were connected to the chair of neurosurgery by a dear family friend-Thank you Ben Ziemer! The Dr. Is actually serving on a medical mission trip to Mexico and responded in a very personal way. From the admin and scheduler, nurse coordinator and surgeons, we’ve been met with compassion, kindness and confidence. There is no better combination. We are so so grateful!
The plan…We will head to FL the first week in Jan. Surgery should happen the second, and another week for recovery and follow up. We were told to plan on staying for 3 weeks. Lots of logistics to work out in the next week. Keira will not be able to return to school this semester as we’re told recovery is about 8 weeks. Lots of dates and plans to come. I’m hoping to hear specifics Monday or Tuesday so I can get plane tickets purchased and to secure a rental. The kids vote….on the beach! I’m hoping to make that happen. Tates goal since two summers ago is to get to the beach. Not the circumstances we’d thought that would get her there, but a silver lining for all of us nonetheless.
In Tate news….she thinks the steroids may be helping the pain a tiny bit. Swelling and tears though are still present. If the steroids help, that confirms inflammation. Not what we want but we are grateful that it may lead to something to reduce this pain. It also opens up a whole new area of questions with a lot of worry alongside that we are not sitting in as safe a place post transplant as we’d prayed for.
Tates pain Dr. Is hoping to get her in for an mri, knee joint fluid aspiration as well as a block for her knees all under anesthesia before we head to FL. Also hoping to get her GJ feeding tube exchanged as well. I doubt they’ll also squeeze the spinal tap in there-that’s a lot of coordination!
Starting Monday, the days will be filled with organizing logistics for fluids and tpn/lipids, central line supplies and access to meds in FL. As well as an “in case of emergency “ plan. Thankful Mayo will be right there. A bit of a logistical nightmare-but we can get it done!
Thank you for the continued prayers and love. As promised to Keira, she wants this page to remain primarily Tates . So I will try to stick to just the logistics concerning Keira’s journey. She doesn’t like the attention but is so grateful to be so prayed for!
Have a blessed Christmas.