Duplicated on our CaringBridge site for permanent record here.
February 19, 2021, written by Mama
94 days in the hospital: 63 in PICU, 28 in the Oncology ward, 3 at In-Patient Rehab!
After spending the night and some morning at home--trying to catch up on sleep (insomnia thwarted me) and continuing to adapt the house for Thomas's homecoming--I rejoined Thomas in his busy therapy schedule.
They keep us hopping here! There is much psychological and motivational work to be done now to get Thomas to cooperate with up to four hours per day of therapy.
Nutrition consulted with us and we all decided to temporarily put Thomas back on 10 hours' nightly of J tube feedings (instead of 8 hours) to make sure he is getting enough nourishment. These last few days his calorie tracking reveals significantly too little by mouth. The schedule on Rehab is simply so strict that there is little wiggle room for making up for lost calories. If Thomas's meal tray is late (a not infrequent occurrence), he is whisked off to the next therapy session. If he is feeling queasy for a couple of hours and misses a meal, his anatomy means he can't just "make up for it later" by eating a large bolus of food like the rest of us would do. I feel confident when we get home, Thomas can get back to increasing his calorie goals by mouth under a more relaxed schedule. He has been eating 50% of his entire calories by mouth within a mouth of even being cleared to drink clear liquids for the first time, and that is way better than anyone on the team expected!
I gave Thomas a shower today for the second time. Clearing me to do Thomas's personal care safely is part of OT's official job with us, so they were involved talking me through it ahead of time and checking in on me afterward. Now I have the "green light." No, seriously, there is a traffic light on every patient's door here with red, green, and yellow indicating what maneuvers the parent is cleared to do safely (such as transferring the patient). I have a check on the green light!
We have found here in Rehab that we needed to earn some greater respect for how much quiet sleep a five-year-old needs. Today, after getting support and encouragement from the Medical Director of the Rehab unit, we made these fun signs to post up inside and outside of Thomas's room.
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