Day 23

Copied and back-posted from our CaringBridge site for permanent record here.

December 10, 2020, written by Mama

When I woke up this morning and checked Facebook, I learned that this Sunday our neighborhood is lighting up our cul-de-sac and any private houses who wish to participate with "Luminaries for Thomas." I cried tender tears with my coffee!

Today the team began lightening Thomas's sedation, while keeping his pain medication at maximum, with the goal of extubating him Friday afternoon or Saturday morning. This means that Thomas is moving in his bed more and quite dislikes the tubes down his throat. At one point I asked him, "Do you want me to read you a story?" and he nodded his head yes: his first communication to me in 11 whole days! I burst into tears . . . and then I read him Frog and Toad, followed by selections from Paddle to the Sea and Bedtime for Frances throughout the day. I would ask him if he wanted me to read one more page and he would nod yes again. Once I asked him if he wanted me to turn on some soft music and he shook his head no vigorously. I even got to see his eyes open! I told him this afternoon that all his siblings had come to visit us at the hospital and had been downstairs, and then I listed off, "John and Mary and Margaret and Joseph and Thomas and Dee-Dee!" Thomas immediately opened his eyes wide, I believe to look for his beloved siblings.

Sweet Thomas has so many lines coming out of his body--all his limbs and four drains plus two lines coming out of his trunk--that lately I've been kissing the one foot that is free of entanglement. His other foot even has quite a thick tube stuck into it for blood draws.

Just last night, Chris and I talked through the nuances of a plan to start swapping out here at the hospital for when Thomas feels very stable. We're not there yet, but we feel like his stability is within sight. Just this afternoon, I was reminded why I haven't left yet. Thomas began bleeding in a way that was an emergency averted by sharp nurses always watching him. The clues are so subtle. First, his four drains had increased output (which is measured hourly) 30-40% in one hour. Duly noted by the nurses. Then his arterial line began what doctors call "oozing," but you and I would call "bleeding a lot!" They cleaned him up and put in an order for labs "stat" (which means they would get results in perhaps 15 minutes). While we waited for results, Thomas's BP began dropping rapidly from MAPS in the 80s to 70s to low 50s. An M.D. was in the room in a flash and saline was being readied to be pushed straight into his access points again. The labs were called up and just since this morning, Thomas's platelets had dropped from 200 to 120 to 61, and his INR was not a good number. Plasma, platelets, and cryo were ordered stat (so they would transport from the blood bank to Tom's room in less than 10 minutes) and the plasma was pushed manually in the fat, plastic syringes straight into his access points. His blood pressure became much nicer and the platelets and cryo were hung for normal drip delivery. Somewhere in there, Thomas's art line began "oozing" (!) yet again in a way that will require a linens change later. The whole situation started, was treated, and came to resolution in a total of 30 minutes because these nurses keep an eagle's watch. 

Thomas has now received 29 units of blood products, most of them in the last two weeks, not the full three weeks of his stay. Thank you, anonymous blood donors.

I want to acknowledge that last night because we were both in the hospital for Thomas's surgery, we missed attending the "ranking up ceremony" at Mass where John would be officially acknowledged as having achieved the altar server rank of Thurifer, only one rank below the final rank of Master of Ceremonies. He is devoted to altar serving, serves weekly or more, and passed the test given for ranking up. Thank you to the three parents who took photos of John's event for his parents!

Our two daughters hatched a plan without telling us and stayed up late last night painting 16 Get Well pictures for all the children on the PICU ward. One girl painted all the boy pictures and one painted all the girl pictures. I am so proud of these girls who are developing their hearts of service! The charge nurse here even said that yes, she would accept the gifts because they have a special Disinfecting Light Box here and she will disinfect each picture before passing them out to the children. Ah, the Times of COVID!

Step by step by step, the team is getting Thomas strong again!