Support Registry Update

Discharged

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The Steinhaus Family
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Andrew was discharged yesterday afternoon. We are due back in clinic today for labs and blood products. Our major prayer is that his levels won’t be so low that his hematologist tells us to go back to the hospital. (That’s probably if hemoglobin is in the 5s and platelets are under 10.) Not only do we really need a break from the hospital, but there’s no direct-admit, so we’d be going back through the emergency department. 

A theory for why Andrew doesn’t have a more durable response to platelet infusions is that he’s developed antibodies from a lot of exposure to donor platelets. Knowing the exact antibody would allow them to cross-match the platelets he receives. This is usually effective for at least some time. Yesterday, however, the test came back negative for antibodies. He could still have some antibodies that were hiding, but that’s not helpful until (or if?) they can retest. 

A possible explanation for suppressed red cells—an issue totally separate from platelets—is that his body is attacking and breaking them down as soon as more are transfused. The lab test checking for this also came back negative, so that is a win. It could also be a prolonged reaction to a previous unit of donor red cells. Not sure what there is to do about that besides give it time.

If you are looking for a way to love Andrew from afar, please donate blood. 

Andrew is very weak and needing to use a walker with frequent stops. Each hospitalization eats away at his stamina, and this was a long one. Still, it’s nice to be home and sleep in our own bed together. When we walked into the apartment last night, Wesley yelled YAY!! and ran to him. He likes the new walker and thinks it might be for him too. 

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Comments

Kristin.g.lambert 12 months ago

How lucky Wesley is that Daddy brought a jungle gym!! Praying for you all ❤️

Francesco Deluca 12 months ago

We love you guys. Welcome home.

Donna Thompson 12 months ago

Praying for strength. Love to all.

Deb Long 12 months ago

I'm glad you are back home - that's a relief and hopefully Andrew can get some rest too. Praying for all of you and sending huge hugs.

Joni Woolf 12 months ago

You are brave.

Meredith Conway 12 months ago

I love this picture so much. So glad you get to be home and hope today’s tests go well. Love you all 💙

Jason Shain 12 months ago

So glad Andrew is at home and enjoying the family. Thinking of you all every day!

Jennifer.barrett 12 months ago

Sending you love and hugs, Elyse. Hope the tests went well today.

Debbie Smith 12 months ago

I’m sure the welcome home made Andrew’s day. Praying for good test results today so that hopefully yall can stay home awhile.❤️

Tom Jacobsen 12 months ago

I am a KPMG friend of Andrew's and would like to talk to Elyse about how best to help Andrew. 802 395 1134

Mary Alice Cashin 12 months ago

THERE's NO PLACE LIKE HOME - so glad you can both be home and hopefully recharge before next steps. Praying for some good news! BTW - What an awesome pic of Wesley with his Daddy!!