Duplicated on our CaringBridge site for permanent record here.
February 11, 2021, written by Mama
86 days in the hospital: 63 in PICU, 23 in the Oncology ward
Today Thomas declared a "no pictures" day, but it was a good and quiet rainy day nonetheless.
Thomas was flirting with a fever all day, with temps bopping around between 100.4 down to about 99-even. I took away his blanket, put a cool wash cloth on his forward, and kept the 3-alarm medical investigation away.
Dr. B---- stopped by bright and early when Thomas is chattiest so Thomas taught him everything he knows about giant squids, which is a lot.
He painted pictures while sitting on the couch for OT and then he sat on a bench, practiced kneeling, and attempted standing with PT. Speech stops by less and less because there really is no need: Thomas speaks just fine (albeit still quietly), he swallows just fine, and his mental clarity is all there.
I learned from Nutrition that even as of three days ago, Thomas is nearly at his current goal for food by mouth. He is receiving 50% of his calories during the 10 hours of J tube feedings overnight, so the goal is for him to consume the other 50% by mouth. Three days ago, he achieved 40% by mouth, which made the team enthusiastic. I know the subsequent two days of food tracking was even better, so I'm excited to hear if he's already achieving 50% calories on his own.
I finished reading aloud the children's Bible gifted to Thomas during our stay here. It has been his favorite book for some time. I brought from home a slightly more advanced children's Bible for us to launch into next.
Thomas had a bumpy evening: After Nuke Med came to visit us bedside, instead of us going to Nuke Med, Thomas received his SSKI medicine, which protects his thyroid from damage from the MIBG medicine he will receive tomorrow. The nurse went to hep lock his port, flushed it, and then it just froze. Two nurses and half an hour later of fussing with it meant Thomas needed a new port. They de-accessed, then they re-accessed, and the new port wasn't put in correctly. The sweet nurse bowed out ("I only try once per patient"), which I appreciated, and a more experienced nurse stepped in to give him yet another port needle. Thomas was entirely brave, even though the Betadine stung the second time because it was going over a fresh needle hole, and even though he had to stare down that 1" long needle twice. All the nurses were impressed with our little trooper who didn't cry.
Specific Prayer Request: Tomorrow is Thomas's Post-Treatment Testing. We thought we'd be home for three months before his scans, but God had other plans and here we remain, never having left! He will be at his MIBG scan under general anesthesia all morning before Chris and I take up vigil in our hospital room, waiting for an oncologist to come deliver to us the news: Is there No Evidence of Disease (NED) or does Thomas still have detectable cancer cells? Tomorrow is a really big day for our family. We pray for Thomas to be free of all cancer and we also pray that we have the malleability to unite ourselves to God's will.
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