Day 73: Sickness

Duplicated on our CaringBridge site for permanent record here.

January 29, 2021, written by Mama

73 days in the hospital: 63 in PICU, 10 in the Oncology ward

 

Today I felt I understood more viscerally why so many doctors, nurses, and Child Life Specialists have said to me over the last week that they don't so much mind when a little tyke like Thomas says something sassy or doesn't use his polite words: "We're just so glad he is well enough to be sassy!"

In contrast, today Thomas was feeling puny starting very soon after I returned to relieve Chris from my overnight at home. Even as the Surgical Team stopped by to say that Thomas was being advanced to both full liquids (e.g., dairy) and puree, Thomas was rapidly becoming very quiet and withdrawn. Beyond one sip of milk, he never even tried any of his new options before being declared NPO again . . . in case he needs to go to the OR.

Thomas seems likely to have two things going on. First, his pleural effusion is returning on the right side (as seen by the X ray he had), so its possible his chest tube was removed too soon (yesterday, 24 hours ago). His heart rate was tachycardic in the 160s and 170s, his respiratory rate about double his normal, and his oxygen fell below his normal 99-100% while his breathing became visually labored and his nostrils flared. I was actually alone with him early this morning, noticing the labored breathing, when I called in a nurse and asked her to hook him back up to the monitor, which he had graduated off of days ago. That's when we saw he wasn't doing so hot.

Second, his temperature was bopping around in the 99s all day. He fell asleep by about 9:00 a.m. when he hasn't taken a morning nap in almost two weeks; in fact, he isn't even wanting to take an afternoon nap anymore. He has spent most of the day drifting in and out of sleep, staying awake for ten minutes at a time. We were all just waiting for him to spike a real fever, which he did mid-afternoon.

He is being treated with Albumin and Lasix for the pleural effusion. Also, Respiratory is having him do hourly breathing exercises to try to inflate his alveoli better. If his pleural effusion cannot be treated medically, he would likely have a PleurX catheter put in by Surgery in the OR.

For the possible infection, Thomas has been put back on Cefepime and Flagyl, the two big antibiotics he just received for 21 days, stopping that course only 48 hours ago. (Did we stop it too soon?) Two cultures each were drawn from his three lines. He's on Tylenol for fever. He's also being given stress dosing of hydrocortisone.

Your prayers are appreciated that this is just a small bump in the road that was intended to involve transferring to In-Patient Rehab this coming Tuesday and being discharged home two to three weeks later.