Musings from the Threshold

Category Archives: Katie’s Health

Our Visit to Children’s Mercy

Thank you for praying for Katie, and for us as we seek answers for her.

Our trip to Kansas City was productive and fun. Papa and Gramma Byrd came with us and took the younger kids to Crown Center and other adventuring while Jonathan, Katie, and I went to Children’s Mercy for her appointment.

We were astounded by Children’s Mercy. The entire atmosphere was different than that at any specialist’s office we have been to. It was a lovely, encouraging difference.
 
The Hematology/Oncology (HemOc) clinic is its own little world at Children’s, including having its own air filters! Dr. Hetherington (aka Dr. Max) spent about two hours sitting down with us and seeking to understand Katie’s story. It was extraordinary. We learned a great deal from her, just in talking over different possibilities. She seemed to be forming a multi-tiered list of culprits to investigate.
Katie broke her vials-drawn record on Friday at 13 vials. Some of those labs have come back, and others haven’t yet. We also went for an abdominal ultrasound, which confirmed that her spleen is enlarged (something that fits with various parts of her puzzle).

After we left Children’s, we explored Union Station, drove around KC a bit, then enjoyed the Plaza light before heading home. It was neat to build some fun memories together in the midst of our concern about Kate.

          

As of today, Dr. Max’s plan is to present Katie’s case to the HemConference next month. She is wanting to get input and ideas from other hematologists. Labs that have come in so far from Friday have still not given any easy answers. So, more patience is in order, but we are encouraged to be working with Dr. Max, and trusting in our Sovereign God’s wisdom and goodness.
Please continue to pray with and for us. Thank you!

J&L

FB Posts – Dec 19, 2017

8.20am – Brief Katie-update –

I got to talk yesterday with the nurse practitioner of the Dr. in KC who is working on Katie’s case. Every single person with whom I had contact at Children’s was so kind. The nurse practitioner called me back shortly after our conversation and said she hoped to call me today with an appointment time. So we are trusting the Lord to work out those details!
Kate’s hemoglobin has dropped from 10.9 on 11/27 to 9.4 on 12/14. It actually isn’t as low as I expected, but obviously is dropping quickly now that we are past 90 days from her iron infusion in Sept. We didn’t get a read on her neutrophils because of a kerfluffle with the specimen, but have no reason to expect they have come up, so are still be very careful about her exposure to germs.
Thank you for praying! We are resting in our Heavenly Father’s love and sovereignty, and praying fervently for wisdom and healing.

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9.03am – Praise the Lord! We have an appointment for Katie at Children’s Mercy at 10.30 Friday morning!