So much happening but not a lot of developments. Just more and more fun to be had at the hospital...
Anna still has her feeding tube but hasn't been allowed any food or drink since Sunday. They think her intestines aren't working so they are trying to allow them to be completely empty with additional medications and without surgery.
It helps that she isn't being pumped full of so much fluid, she slept extremely well last night and didn't have to continually get up to go to the bathroom.
It is however, extremely cruel to give a child massive doses of steroids that cause them to feel ravenous and then not allow them to eat.
Last night the nurse noticed that her heart rate was quite low and kept checking it manually. It was also very irregular. They ran an EKG test on her, which she slept through but was not pleased to wake up with the stickers on her chest this morning. It is 11 am and we have yet to see any doctor today - the surgeon, the cardio team or the oncology team. Sam and I are a feeling a bit, more than a bit peeved. We both feel that our old team was more responsive and attentive. Sam wonders if it is because what she is in the hospital for now isn't for the cancer but for the side effects.
Thursday is coming - Day 28. I have no idea how it has already been this long! Thursday IV chemo, spinal chemo and bone marrow test. They are doing the bone marrow and hoping to find less than .01% of leukemia in her marrow. She went from 97% to 4% in two weeks so we are continuing to hope and pray.
Anna is feeling better now that her intestinal blockage is gone and she is definitely feeling more active. Today her weight was 14.3kg, yesterday she was 14.6. :( Now she is getting to be more of herself and is becoming much more vocal, more annoyed and less patient. She wants to eat - there is a huge list of food that she has us write on her plan board for what she wants to eat when she is finally allowed. She wants to go home and is extremely loud and vocal about her wish - almost as loud and vocal as her wish to eat.something.right.now!
Today is more waiting and more waiting. She is finished with the antibiotic so even though her ANC is not yet 200 we could go home if the intestinal and cardiac issues were resolved. I feel that stereotypical two steps forward, one step back but rather in reverse. One step forward, two steps back. Hard to maintain positive when every day or every other day is a new problem. I suppose it is to be expected with new normal. Sucks though and I totally don't have to like it!
No comments:
Post a Comment