Sunday and Monday
Unit 1
Weight 13.5 Kg's
Nurses Leslie/Megan
WBC: 0.0 ANC: 0.0
Dad does not start with all that encouraging news, a continuing fever with more cultures and your WBC dropped from 0.1 to 0.0. However, you did get good lifts off yesterday's transfusions and most levels are doing really well.
So last night was not so bad for us, but your sleep habits are still irregular and since I stay awake during the day I'm getting further behind on sleep. Your mom and Morgan are going to watch Tanya's body building show this morning so its just you, me and the nurses. The bad new for today is that you seem to have a hate on for me from the word go and I don't tolerate hitting or kicking no matter what is going on. Good news is Megan is back with us today and you have really taken to her. After your stats etc. she sits down and offers to tickle your back and tummy, you look over at me with a smirk. I figure maybe with this much energy to spite me you might even have enough energy to eat so I take the opportunity to go get you an ice cream sandwich. All I can find today is an Oreo one in the vending machine, bad news is the front slots on both rows is empty, this $3 ice cream sandwich is now $6, but its worth it if you eat it and you do.
After the sandwich your angry self is back. Megan has other patients that she is off caring for, but when she returns your switch flips again and you are Mr. Charm. This time you talk Megan into sitting down on the bench with you on her lap and out comes that smirk. After 10 or 15 minutes of cuddling her though you admit your tired and want to lay down with Dad again. You spend most of the day catching up on your sleep (6 hour nap) so I can imagine tonight won't be any different but I know you need your rest still.
Your night really was not that bad from a sleep point of view, we didn't go to bed till almost 11:00 pm, but you slept pretty good. I did not increase your evening basal rate of Morphine over night as we had not done a lot of bolus during the day. I am still not sure this was good or bad, you slept fine and just used a bolus to settle you when you awoke but that is really par for the course. The logic here is to ensure we are not over loading you with morphine and just contributing to the constipation or urine retention for no reason. Your CBC shows all your counts are still down and you are getting more red blood cells today. When I compare this round to the last, your Mucositis started 2 days later on day 10 but we are still keeping to the same time line for counts coming back. With that we are anticipating that you will be suffering out the same 13 days and won't get out of here till after next weekend.
Kallum, I have to tell you that watching you with Mucositis is just tearing me apart again this time. I know its part of the journey and its the goal that is more important but being helpless all day and night not knowing if I'm interpreting your pain level correctly is agonizing. This morning Momo and Mom stopped by so I could get some groceries as Mom is heading home. I came back to find them playing with you and even a small smile on your face, it brings me relief.
As always you define the word courage K
Love your Dad
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