Musings from the Threshold

Monthly Archives: December 2017

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!

 

FB Post – Dec 10, 2017

Many of you are aware that our sweet daughter Katie has been struggling with her health over the last few months. I’m not a “share everything on fb” gal, though I do try to be real and honest. I have many times considered sharing her situation more publicly, but we honestly hoped that things would be figured out/resolved quickly and proven to be no big deal.

Well… not so much.

On Sept 6, we went in for a blood transfusion because Katie’s hemoglobin was only 6.6, and wound …up doing an iron infusion the next day because Kate had too many antibodies in her blood for it to be safe to transfuse.

In the months since, we’ve been to the hematologist, the rheumatologist, the pathologist (for a bone marrow biopsy), and spent lots of time communicating with our fantastic lead doctor. Kate has had So Much Blood drawn and tested. For So Many Things. Her puzzle is evidently one that is not easy to put together.

While we’ve been trying to figure out how things fit together, her lab work has continued to go wonky. Her platelets have dropped as low as 107k, her neutrophils to .oo, and while the various tests that have been run show that there is definitely something wrong. they are not telling us what it is.

A scare last weekend with a fever while severely neutropenic illustrated vividly how quickly things could get critical with Katie, even when it looks like she’s not faring badly for how poor her blood is.

We have decided, in agreement with Katie’s medical team, to pursue answers with a facility where doctors from various specialties can come together and look at Katie’s puzzle. Mayo Clinic was the first choice because they deal with a broader (worldwide) range of medical mysteries, that door shut very loudly with the news that they do not take our insurance.

We are thankful for God’s sovereignty and are taking that shut door as His leading toward Children’s Mercy in KC. We trust that He has all the right people in place to move forward exactly as He sees fit.

We are praying to get in at Children’s asap, and are hopeful that we will be there this week. Papa & Mama Byrd are planning to arrive from FL on Monday to help with things on the homefront while Kate & I go to KC and Jonathan continues working.