Caden's Journey Day 6

Last night was the second worst night of Caden's life, the first being the night before the ER visit.  One of the choices that was taken away from him yesterday was the button they gave him to administer his Morphine.  The Pain team has been incredibly awesome.  They come in every morning, ask Caden how he is doing, ask us how we think the dosage works for Caden, and then tell us what they'd recommend.  Yesterday they came in to give Caden a choice.  He could keep his button until the Portacath was placed or he could make the trial run for the dosage of Oxycodone that would be serve Caden when he gets to leave the hospital.  The button can't go home with him, unfortunately.  His immediate reaction was to keep the button as long as he could.  She said this was just fine, but that in the long run it would be better for him to try the Oxycodone.  Since they have to kind of calculate the does based on the Morphine he was currently getting, it was kind of a trial and error.  They'd give him the dose that they thought was equivalent and then ask him after four hours if the dose was adequate.  If not, they'd up the dose and ask again.  The day was pretty good.  We noticed that as soon as the kids got here he was asking for more, but this could have also been attributed to his rising anxiety as well.  However, it became blaringly apparent that it was not enough when Caden woke every hour in pain.  He's been maintaining a four for the past few days, which has made it so that as days go by he's up and around more, chipper, joking, and generally happy.  Last night he was pretty consistent at a six.  Also noting that he was an 8 at his highest pain threshold.  It was a seriously hard night.  As the Pain specialist left, Caden had a break in his brave armour for about two minutes.  Through tears he said,  "She didn't really want to give me a choice. Why did she ask when she knew she was going to make me give up my button?"  He's right, they should not have asked him if they were going to tell him it would be better in the long run.  They should have just walked in and said it was procedure to do this and leave it at that.  Caden wants to know what's going on around him.  He has certain ways that he's learned he likes things.  He wants his oxygen mask to be placed like this, if he puts his picc line arm like this it doesn't tug as much, if he puts his ECG port between the mattress and arm of the bed it doesn't pull on the leads as much.  He just likes things they way he likes things.  He figures out quickly what works best for him.  He also likes to figure out how things work so that he can do them on his own.  He likes this sort of thing anyway.  He'll figure it out, that you very much.  So, when he was given an option and it was vetoed in the end, I can totally understand his frustration.  There was a point last night when I could tell he was totally exhausted and just wanted to be free of the intense pain and just fall asleep, that I had the thought that I just wish they would have left him alone.  I know it will be better for them to have the information that yesterday brought as far as dosage for after our first round of Chemo that we think will start tomorrow, but when your son is in so much pain ALL.NIGHT.LONG again, with the worst night he's ever had emblazoned so fresh in your mind, you kind of don't care about what would make someone else happier.  It felt like a HUGE step backward.  After days of getting better each morning, this seems like a massivly disappointing morning.  It can only get better from here. 

 It's going to be a good day!