Since his urine didn't get clear by 6pm (he finally peed shortly after 3pm after we woke him up from the nap), and after the CPM chemo he would need 4 more hours of IV with plenty of fluid intake orally for 4 additional hours, the doctor gave us the option to either stay over night and finish 8 hours of fluid over night, or come back next day and do it during the day. I thought it was a no-brainer -- since who knows how clear his urine would be the next day and spinal tap is scheduled for next day. His urine finally got clear enough by 9pm and it was a peaceful night with lots of diaper change in the sleep. The only part that didn't work out well, is that our original OR appointment was 11am. We were hoping to be discharged first thing in the morning, then go to our outpatient OR appointment. But it still didn't work out -- I'm suspecting for insurance reasons, that we are not technically outpatient today. We were just told that we are now an add-on for inpatient OR -- the earliest is 2pm. :( That means no food for Lucas since last night till late in the afternoon...
I also need to learn to administer the ARAC IV at home. So after the OR, we will come back to the "hotel room" and the nurse will watch me do it for today -- to make sure I feel comfortable doing that at home tomorrow and Thursday.
You are almost half doctor now. I'm sure you will do a great job since you are so calm! Lucas is really lucky to have you as his Mom.
ReplyDeleteI actually twisted the wrong end of a small connector and the blood was shooting out. But I'm glad that I made this mistake at the hospital rather than at home! I wish they would offer me a play kit to study and practice first... A lot of current medical practices are linked to how insurance company would pay for things. Anything extra would need to come out of some kind of non-profit foundation. Nationwide Children's has good support functions, and parents like me would keep making suggestions to improve them. :)
DeleteWish they have visiting nurse helping you for couple of days before u master it...
ReplyDelete