January 8, 2021, written by Mama
Today a nurse suggested I work with Child Life to create posters: One directing all the staff in how to comfort Thomas and the second showing our current routine of the day so we won't be overwhelmed by staff visiting. The Child Life specialist made the cutest comfort poster, including how Thomas loves his sloth stuffed animal, facing the window, and drinking sips of water off a sponge. Then I was empowered by writing out his current routine and being told I can change it at any time (it is written in white board ink). The Schedule is posted on the outside of the door for all visitors to see.
Child Life also is helping us with helping Thomas conquer his foe, the Fan (cue ominous music). Thomas is still having fevers and we are trying to treat them environmentally, using as minimal acetaminophen as we can to protect his liver. We all know that when one has a fever, one actually perceives oneself as cold, and then we have to take Thomas's blanket off him, leave him exposed to the air, and blow a fan on him! He protests vehemently, "Hey! Hey! Hey! Stop it!" Now if he so much as sees the fan or even hears the word fan mentioned (as dear Miss Hailey discovered), Thomas bursts into sobbing tears. Child Life is helping him make friends with the Fan, first by having it all the way across the room and we plan to decorate it in a fun way this weekend. Also, they even went out today and bought him a little mini fan to put on the bed itself in hopes that its diminutive size would be less intimidating. It's really sweet the effort they are putting into helping him with this one issue.
Thomas had good sessions with Physical Therapy and Speech Therapy today, the latter working on swallowing water. We have been taught the techniques to move him beyond drinking water out of a sponge to crunching tiny ice chips and receiving water from a straw pipette (limited to 5-10 attempts twice a day because he fatigues so fast, it can become dangerous). Currently when Physical Therapy comes, their goal is simply to stretch out his four limbs, a project which takes about 45 minutes. If I think about how Thomas was my most physically active five-year-old, could ride a bike like a BMX whiz, climb trees, run everywhere, and splash in the pool, it's overwhelming to compare that now he can't even have his bed inclined to 45 degrees yet, nor can he wiggle his toes. Thomas's orders have been increased to PT and Speech 5 times per week each. He's a busy boy! It's kind of like setting our sights way ahead on university, but Chris and I are making it our goal that he will meet the strict criteria and be strong enough for doing in-patient rehab at the end of all this. We were told today that one criteria is to be strong enough to complete three whole hours of physical therapy daily. We'll get there, Thomas, we'll get there!
Today Thomas continued withdrawing from drugs. He sometimes had WATTS scores of 6 and 8 (when they want them 3 or below), so it's tough. He is having a lot of tremors and today started gagging up/vomiting green stomach juices. They've increased his Clonidine and put him on Zofran and we're going very, very slow. We haven't even reduced his Dilaudid in two days, and today's reduction in Precedex was only from 0.6 to 0.5.
Sometimes Thomas's communication today was wonderful. We read a story from Frog and Toad called "The Kite" and then I surmised that I don't think Thomas has ever flown a kite. He volunteered, "We used to have one." (!) I said he was right and then asked what color new kite he would want: the answer is GREEN. He was able to say "hello" to most people who came to the room. However, the delirium is sometimes still obvious. At one point, three of us were in the room: He was able to identify Daddy, and he certainly knew who his beloved Child Life Specialist Hailey was, but when asked who I was, he said, "I don't know." Then he got teary and said, "Who are you?" In those moments, I make myself hang on to the fact that my sweet child still needs to hold my hand while he falls asleep at night and for every nap during the day . . . whoever he thinks I am.
Daddy was able to spend the whole day today with his boy and I went home from 2:00 to 5:00 to undecorate the Christmas tree and interior decorations. I was single-minded in my focus and was surprisingly successful! The kids were a big help, especially my big son John.
In other tidbits from the home front, Mary took photos of two bucks and a doe in our back yard . . . from only 20 feet away, which I told her was too close to young bucks! The children finished their first week of school (about 50% workload assigned as we ease back in) and completed their lists, so they earned enough reward stars for the ladies to watch a girls' movie and the gentlemen a boys' movie on Friday night.
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