Tuesday, Dec 1, 2015 (Day 26 post CART cell infusion, 4th day in PICU, 12th day in the hospital)

On December 2, 2015 by Michelle Love

Tuesday (Day 26 post CART cell infusion, 4th day in PICU, 12th day in the hospital) …

The word from the doctors this morning during rounds is that overall, BJ is improving. (Big sigh of relief to hear that!!) It’s another long one, but if you read through to the end of this post, you’ll see how complicated all of this really is. There are lots of considerations in a host of lab values, medications, side effects, and risks vs. benefits.

Last night BJ had periods of delirium, but it was less often than the previous night. He is still on Precedex to calm him and Risperdol for his confusion/delirium. Overnight, he slept for about 45 minutes to an hour at a time before waking up again. He didn’t try to pull out his IVs or pull off his oxygen as often, but he woke up a couple of times disoriented and confused. We are still working on trying to keep him awake during the day, so he will sleep at night. He has been very lethargic all day, and not nearly as verbal as yesterday.

He was finally allowed to have something to drink yesterday, which made him very happy. He had constantly been asking for water or gatorade, and was very frustrated at being denied each time. The reasoning was that if his oxygen sats deteriorated, they would need to intubate him, and he would need an empty stomach for that procedure. His oxygen level was decreased down to 15 liters yesterday, but was turned back up to 20 overnight because his sats kept dropping to the mid 80s. He stayed at 20 liters most of today, and was just lowered to 15 again. It will only take getting down to 6 liters to get off of the high flow cannula.

He had 7 units of platelets transfused every 4 hours from yesterday and throughout the night. This morning’s platelet count was still only 26k. It was not high enough to have the spinal tap they wanted to do today. He also received a unit of blood, with his hemoglobin below 8. His white count remains very low. No blasts are showing up either. He has had an incredible response to the CART cell treatment, and it is truly an answer to our prayers.

He is being given Lasix every 6 hours to remove extra fluid that is collecting in his lungs. There is a balance needed in the on-boarding and removal of fluids to keep his electrolytes at appropriate levels. Potassium and Magnesium have been added to his IV nutrition to keep this in balance. His chest x-ray this morning looked about the same as yesterday. He still needs quite a bit of improvement in expanding his lungs. Every hour or so, we give him the incentive spirometer to exercise his lungs. He is currently able to move the bar to the 500 mark. He has an ECG every day to monitor his cardiac function, specifically the presence of prolonged QT interval. Some of his medications, along with electrolyte imbalances, and abnormal liver functions are potential causes of this cardiac arrhythmia.

BJ had an ultrasound this morning on his liver and abdomen. His bilirubin levels are high, and his skin and eyes are jaundiced. The ultrasound showed gallstones, which didn’t surprise the doctors. He hasn’t eaten anything in 2 weeks, so the bile in his gallbladder is thick. They started a medication today to try to counteract this until he can start eating solid food again. There was also some suspicion that either his anti-fungal medication (Voriconazole), or the IV Tylenol doses every 6 hours over the past week could be causing his liver issues. Tylenol was ruled out, and his Voriconazole was stopped temporarily.

Physical therapy was supposed to make a visit today, to get some movement started, as he has been in bed for almost 3 weeks now. That didn’t happen, because his bone marrow aspiration and biopsy were scheduled at 1pm today. He was given Fentanyl and a local anesthetic to reduce the pain during the procedure. They attempted to take the sample from his right front hip bone. Several attempts were made, because his bone marrow was mostly empty. This was expected, but to be able to tell how much leukemia (if any) is still present, they needed a sample of his marrow. He has been asleep for most of the rest of the afternoon.

This kid has been through hell and back on several occasions. And still, he hasn’t lost one of his best qualities. He saw me taking a picture a while ago after he woke up and asked for some gatorade….and he flashed me that awesome smile. I am one lucky momma.