Day 50: Weaning and Withdrawals

Duplicated from our CaringBridge site for permanent record here.

January 6, 2021, written by Mama

 

Today's accomplishments were weaning down some medications: Precedex (sedation) 0.8 to 0.6 and Dilaudid (pain) from 0.3 to 0.25. Little Thomas did start experiencing some withdrawal symptoms, mainly tremors and coughing-yawning. 

Also, he developed a fever last night that came and went but lasted all day today. They have to start with the presumption that every fever indicates infection, even though his white blood count, BANS, and infection markers were fine. They cultured all his lines and bodily fluids today. If all of that shows no infection, then this could be a fever simply from an inflammation immune response or from withdrawals. We have to be very careful with acetaminophen because of the injuries his liver sustained, so we spent much of the day treating his fever environmentally (no sheets or blankets, aiming a fan at him, to which he would protest, "Hey! Hey!").

Despite making steps in the right direction, Thomas did not have the most fun day: he was pretty quiet and feeling kind of puny.

Being in the hospital is incredibly tiring: We had a steady stream of caregivers in this room from 6:00 a.m. when Surgery first arrives each day till 3:45 when the folks were finally done. Every specialty of doctor (some cycle through two or three visits daily), Physical Therapy, Speech Therapy, Social Worker, Child Life, and more. It is very noticeable to me when we have such a busy stream because the Strict Rules are that I am to keep my mask on when any care provider is in the room and I am not to eat if anyone is in the room, so you can see the challenges.

Another change I'm still becoming accustomed to is that Thomas is now improving so much that he has gone from being assigned two full time nurses for at least a month, to one full-time nurse, and now he shares a nurse with another patient, sometimes who is around the corner and several doors down--which makes him more like a regular PICU kid! It sure is strange for me, though, because I have to actually go seek out the nurse when there is a problem or a need. I don't dare leave Thomas alone, even asleep, for me to go get food or use the restroom, so I time any little errand till someone is in the room. I know that his monitor is observed via computer screen at the nurses' desks, but they can't see on his monitor if he has woken up and is scared, nor could they hear his tiny voice crying. Chris and I used to change places in the van in the downstairs roundabout, but now neither one of us will leave Thomas alone that long, so one parent parks the car in the parking garage and walks all the way in, before the other parents departs, adding a good 20 minutes to the exchange. I can't even fathom what it will be like when we might move to Progressive (one nurse to three patients) or straight to Oncology (one nurse to four or five patients). I just have to trust that Thomas will be so much healthier by then! In the meanwhile, I try to find my new sea legs.

I went home for another evening visit to the children today, too.