It started off like a normal radiation appointment, with me taking Mason to be checked in, and then walking with him downstairs and across the hospital to the radiation department. We have been working with Mason very diligently to help him get over his fear of being "poked." We have had conversations at home, therapy play with his buddies, and the Child Life Specialist has been working with him at Primary Children's every time we go to in. He has been getting better and understands more now. Lately, there has been a lot less crying, and he stops immediately after they are done poking him. We were getting somewhere.
And now we'll be starting all over...and it may be worse after this.
Mason's port had been left accessed all weekend. I have no idea why, but the anesthesiologist refused to take the pic-line out (the tube that has a needle sticking into his chest) on Friday when my sister asked him to (I asked her to make sure they did that). Mason HATES having it in, and the only thing that keeps him from ripping the thing out, is the thought of having another shot to put another one back in, although he picks at it constantly. But we had been working with him, and he was getting to be okay with the idea of being poked--as long as he had numbing cream on.
I had been told by various medical staff all along that: a.) I would have a choice, if I wanted the pick-line to be left in or not, and b.) It would only be left in M-F, and it would be taken out for the weekend. This is the reason I chose a port that goes under the skin: Mason needs to be able to shower, and he hates having things like tape, tubes, needles, stuck to him.
When they wouldn't take it out over the weekend, I was furious. But I got over it quickly, and instead had Latu ask the Oncologist to take it out after his chemotherapy yesterday. I did this knowing they would have to poke him again today at radiation, but I knew Mason would do better with it this time. Plus, it was hurting him over the weekend, and he had been begging me to take it out and to let him shower. And just as I knew he would, he did do better today...until they hurt him by grabbing his port and squeezing it with both hands. Then all heck broke loose, and I got to sit there and watch my baby cry and cry while they poked him four more times over the next 10 minutes, and squeezed his port again and again to try and get the needle in right. I don't know if this is common knowledge or not, but that port is SCREWED to his chest! It should not be squeezed at all.
Now just to clarify, Mason's port has been accessed three times before: twice by other anesthesiologists at radiation, and once at Primary Children's. There was never a problem, and it never took longer than a few seconds, allowing Mason to see how quick and painless it was. The three different people who accessed it, only had to look at the bump on his chest, touch the top of it to find the middle, and then poke him. The end.
I won't go into the agonizing details about what happened today. I had it all typed out, but I felt wrong posting it; I'm not trying to give a bad rep to the hospital, or that specific radiation center. But I will tell you that there is no reason that what happened, should have happened. None at all. And the excuses we were given for it are not excuses at all.
And that's where the hard part comes in: I'm trying to figure out how to react. I want to be angry. I am angry; furious, even. I want to switch hospitals, or at least drive to Primary Children's every Monday and have them access his port, because they know how to deal with children. But I know that with good, calm communication with the right people, this will be a one-time thing and I may not have to resort to extreme and hasty measures. Because I can assure you now, it will NEVER happen to my son again. There are many solutions to this problem, and they will be discussed tomorrow with the Radiation Oncologist, and a Social Worker from the hospital.
For now, I am praying for patience, guidance, and the right words to say to make Mason's case heard and understood.
I wasn't going to post this today, but I wanted to end on a good note, since Mason did too. He got to go to his "fun" doctor after all that crap that went on earlier today. He has been excited about it since the last time, and asks every day if that is the day he gets to go to his fun doctor. Well, today was the day, and he didn't have any problems when I told him that's where we were going.
He is doing even better than the last time we were in. His neck movement has improved and he almost has a full range of motion now. Mason just loved being able to play all the games and toys. But once the therapist exhausted all bribes to get Mason to perform the tests and stretches he needed, he brought out the big gun: A bike that Mason instantly fell in love with, and got to ride all around the clinic. And just to add resistance and give his muscles a workout, he got to take turns pulling the therapist, and then me, around on a rolling chair behind him. He LOVED it, and was pushing really hard, letting him pull pretty fast. He thought it was the greatest thing in the world, and cried when we had to leave it behind.
But the therapist has given him instructions to do the same thing at home, so you can bet Mason is going to be giving his muscles a workout probably daily. :)