Day 8: Hospitalized Fevers gone but numbers are poor

Day 8 Hospitalized:  Cleveland Clinic
CBC: Whites: .57; Hemogloblin: 7.9; Platelets: 47,000; ANCs .48
Liver Function:  Total Bilirubin: 8.7! (Normal 1.5); Alkaline Phosphatase: 219 (Normal 45-115); ALT: 52 (Normal: 7-56); AST: 46 (Normal 5-40);
Blood coagulation: PT sec: 11.1 (Normal 9.5-13.8); PT INR: 1.0; APTT: 36.3

Fever continues to stay in the 99 degree area, which technically is not considered a fever. Headache is persistent, especially after getting out of bed. Hemoglobin is still low and they had to give him a unit of blood this morning. His ANCs are also low and he is now neutropenic making him a higher risk for catching other infections! Bilirubin numbers the highest yet at 8.7. Dr.Sekeres, the attending physician was upset he took his AG221 this morning, but we didn't have the results back and there was no note to wait. Everyone yesterday, was like yes, get back on it! Sometimes, it feels like you can't win.

Dr. Sekeres, feels comfortable with letting Todd be discharged tomorrow since they know he has the Rhinovirus and the fevers are gone. However, this is conditional and if they discharge him, he will still require rigorous out-patient care, which makes his BMT doctor and trial nurse a little leery and concerned about discharging him. His BMT doctor has the final say, and she is not going to let him go without multiple appointments for CBCs an visits with the local oncologists to set up transfusions and to keep an eye on his bilirubin.

When his trial nurse came in before noon, she was not very confident about releasing him so soon.  She said a lot would have to happen.  First, they would have to make sure there are no complications or other problems between now and then.  Second, they may need to give him another unit of blood by the end of the day, to help boost him before discharge, because he hasn't been getting the 1.0 boost with the prescribed 1 unit transfusion in the past several days or in other words, his hemoglobin has not been increasing enough after transfusions like they should.  Third, he would need to see his local oncologist as early as Friday, to have a repeat CBC done to check blood counts and bilirubin counts.  Multiple appointments would then need to be set up for next week, every couple of days, to check counts again.  Treatment appointments for transfusions, would follow if necessary.  Fourth, he has to be seen 5 days post-discharge, which means we would likely have to come back up to Cleveland by next Thursday (no weekend days are counted) or he may be evaluated by local oncologist, if Dr. Hamilton, BMT doctor feels comfortable with this.  I know it is difficult for them to not be there to make this critical decisions.  Repeat x-rays will also be necessary at some point too.

Right now, Todd has a killer headache and still feels poorly, he just got some pain meds and is sleeping.  It is hard for me to think about discharging him with low blood counts and him feeling so bad, but I know there is also risks of infections in a hospital too.  So glad we made the trip up here, even if it was only for a few days.  I feel like they have made better decisions for his care here.  No regrets.  Wish we had done it sooner.  Next time, I might just drive him up to Cleveland myself, right away, as long as he is not critical.