*9:00 a.m. Whew! what a night, Bennett did not go to sleep until after 4am. We think it was from the iv caffeine, he didn’t get it until 6:00 p.m. He was wired afterwards and said he felt like he had a buzz. He got two doses of ativan last night and finally was able to go to sleep.

His ANC is 540 from 697. Not the right direction especially with getting neuopegen. His WBC were 2.0 from 1.7 and neutrophils were 27 from 41. His hemoglobin went up to 8.4 from 7.9 and platelets at 114 from 107.

His temp at 9:00 p.m. was 100.6 and has been low grade around 99.5. This is bothersome to me because his temp normally runs 97. The Dr’s don’t treat a low grade until it reaches 101.

I want to talk to the oncology and ENT Dr.’s more specifically today about his head pain. I’m just surprised if the headache is from the spinal tap that it should be gone since it’s been a week since he had it. And if the head pain is from the sinus surgery, the ENT Dr said yesterday that should be gone so what is it? ENT Dr. is supposed to come back in this afternoon when he is awake to find out exactly where it hurts. I’m wondering if it’s not the other sinuses in his head. We have to trust the Dr.’s and take this all one day at a time.

*2:30 p.m. Bennett woke up around 10:30 a.m.; early for not getting much sleep. He had couple pancakes and cereal. He had a personal pizza around 1:00 so he eating much better.
Dr. has increased his senna and myrlax to twice a day for constipation plus he is getting colace. They gave him more caffeine 500 mg at noon so hopefully this will not interrupt his sleep tonight.

His pain is a 7, it hurts on both sides of his head. The oncology, ENT and pain management Dr.’s are discussing of what to do next.

He was de-accessed from the needle going into the port which is how he receives all of his iv medicines. He can only be accessed by the same needle for a week. He was able to sit on the side of the shower and wash his hair/body. They re-accessed his port and now he is back on his iv fluids and pain med. They gave him a bolus of pain med so he wasn’t in any pain while taking a shower. He has been playing with lego, he . wants something to do and not have to concentrate too much especially since the pain med relaxes him.

*9:00 p.m. Bennett’s temp all day has been 100.2. Dr. has started him on another antibiotic called fluconazole (diflucan). This is for fungal infection. They don’t think he has it and all blood cultures have came back negative. They want to give it to him though because he has been on the other two antibiotic meropenum and vancomycin and still having a low grade fever off and on. They want to cover all their bases.

Oncology Dr. discussed with the other Dr.’s about if a blood patch would help the spinal tap headache. They decided it wouldn’t help with his headache symptoms. ENT Dr. doesn’t think the headache is due to sinuses because of the location of the pain in his head being on the side above the ear. They also indicated that doing another CT scan wouldn’t show anything that it will take awhile for the inflammation to go away.

He received another dose of neuopogen tonight, hopefully this will increase his ANC and it will stay at a safe range. I’m a little leary that it will continue and not decrease quite a bit after the neuopogen is stopped. Dr. says depending on his ANC level tomorrow, she may continue to discontinue, it’s a daily decision.

Dr.’s decreased his pain medicine drip just a little since his pain is a 7. He can still push just as much if needed. Hopefully his pain will not get any worse and we can keep gradually lowering it. He can’t be on the pain drip at home and needs to be weaned off gradually. We don’t have a time frame to come home but know this needs to happen gradually. His temp needs to be normal and his ANC needs to be in a safe range.
His oncology Dr. wants to start his chemo medicines back asap.

God bless you all that have reached out to us. Thank for your comments, prayers, and support.