Wednesday, Dec 2, 2015 (Day 27 post CART cell infusion, 5th day in PICU, 13th day in the hospital)

On December 3, 2015 by Michelle Love

Wednesday (Day 27 post CART cell infusion, 5th day in PICU, 13th day in the hospital)

BJ’s respiratory function continues to improve. He was moved off of the high flow oxygen today, and back on regular flow. He is now on just 4 liters and maintaining oxygen sats at 95%, which is a huge improvement over the past few days. His chest x-ray from this morning looked a little better and with help from Lasix, there isn’t as much fluid collecting in his lungs. It actually worked a little too well. This afternoon, BJ’s blood pressure dropped again, and he had 500 ml of fluid pushed until his pressure came back up to normal. They decided to discontinue Lasix overnight tonight.

Doctors allowed BJ to eat today. He chose a banana, and a coke to drink. He ate several small bites of banana, and seemed very pleased with the taste.

A concern I’ve had since yesterday was finally addressed today. BJ has had a big decrease in speech. Monday, he would speak a sentence, and it was labored, but fairly clear. Today, his speech was more like grunts, even though his mental status was clear. He lacks the ability to articulate his thoughts into words. A Speech Therapist came to assess him. Phychiatry also came to do an evaluation. Psyc doctor believed that this may be a side effect from the Risperdol. The team of doctors decided to discontinue his doses of Risperdol, which should clear his body within 24 hours. He was given a white board, and he has been able to write (although very shaky) what he is trying to say. He was taken down for a CT scan of his head tonight to check for obvious issues like a brain bleed. Preliminary results showed nothing glaring. We’ll get the definitive results in the morning.

He is still very sore today after yesterday’s bone marrow aspiration/biopsy. He has had a few doses of morphine for the pain. Preliminary results from his bone marrow biopsy showed the presence of blast cells. His white blood cell count was up to 0.3 today, with 48% blasts as well. This had me very concerned today, but BJ’s cells are still working. He has had a few lower grade fevers the past few days. Results from Day 21 research labs came back today and also confirmed that the numbers of BJ’s CART cells had increased significantly from the last readings.

Physical therapy came to see him today, and got him to a sitting position at the side of his bed. His hip was hurting, so that’s as far as they got today. They did give him some boots to wear to fix his foot drop from being in bed for so long.

He slept better last night than he has in weeks. The delirium seems to have resolved. His doses of Precedex are also being weaned down slowly. It is the hope of the ICU doctors that they can move BJ back to the bone marrow unit sometime tomorrow.