Cheeky made counts on Thursday, and was admitted for his next high dose methotrexate treatment. He also had a lumbar puncture (LP) Thursday to check his spinal fluid and directly put some medicine in. He was a stinker! Next LP will be in the OR with the full anesthesia team because he just doesn’t like to go down without a fight, and it will be easier on him (not to mention less crazy for the outpatient clinic team). He was perfectly safe and healthy, but just doesn’t want to doze off. Deanie came with us to clinic and she was a bit nervous. Everyone had heard so much about her and was dying to meet her, which was a little overwhelming. Once she got acclimated, she was a champ. She played with the other kids, and helped them to stay calm getting vitals checked and such. Everyone loved her.
Naaman is still inpatient now, with hopeful discharge by Sunday evening. Once his body has cleared the methotrexate, they keep him even just a little longer to be sure he is well-hydrated. Therefore should be home well before Santa comes. 🙂
We haven’t had a lot of time to for detailed updates, so we at least try to send things out quickly on Facebook or Twitter. If you use them, remember we are @TeamNaaman.
NG tube is out for now. It was pulled out by mistake on Monday, and the team allowed us to leave it out for now, as he was eating a little and also taking his meds. Thursday we started the worst med, ruxolitinib, that made him vomit and get the NG tube in the first place, so holding our breath he keeps taking it by mouth!
Merry Christmas, everyone! More happy updates soon.