Post BMT +160
Update: About 30 minutes after posting this, Tate spiked a fever. It’s now 3 am and we are in the ED getting labs and blood cultures. We are praying for a virus. No infection. We need to be home with all the kids together.
+160
Today was uneventful for Tate in a not so encouraging way. She didn’t get up at all today. She was up until 2 am with severe nausea from what I think is a combination of meds & miralax into her stomach and now over a week of unable to move things through her intestines. Her gut is literally a pain and completely uncooperative and unpredictable as to which way it’ll go. Currently it isn’t moving anything at all. She woke briefly this morning with ulcers in her mouth and just not feeling well.
Tomorrow morning we head to the msin hospital campus for BMT labs and to get her GJ tube exchanged in interventional radiology. Due to constant pain in her stomach, Tatum is guarded for anyone to touch her abdominal area. So, she’s pretty nervous for tomorrow. We are hoping all goes well and labs look good as we are planning on heading to the mountains for two nights.
Our boys got home tonight! Tate and I haven’t seen TJ for 8 months, and only saw Drew for a couple hours earlier this summer. We are thrilled to all be under the same roof for a few days. I am so praying that Tate feels well enough to enjoy the time together.
Lilly’s Journey needs your prayers. She is battling both a fungal and bacterial blood infection once again. Our hearts are broken for the continual pain and misery that seem everlasting for Lilly and her family. Her team is looking at transferring her to the NIH in Maryland for fresh eyes and perspective. Pray for Gods guidance in finding the best solution for Lilly.
And baby Chloe also needs prayers. She remains in the PICU with an aggressively growing cancerous tumor that is causing serious problems to her kidneys and liver and delaying chemotherapy. We pray for wisdom for the medical team and for Gods healing hand to touch both girls. We love you Stevenson’s and Downs!