Everett got his PICC line removed after spiking a fever and having more cultures drawn. The bacteria that had invaded him before invaded again. It is believed that somehow that infection got into his line and continued to infect him. So, it's out now and he has an IV until later in the week when we hope his body is ready for a port. A port can stay in the body for years and is an easier, less debilitating way for kids to be kids and still get their chemo meds.
Last night we decided to have Ev go to bed without morphine. He hasn't needed it during the day for awhile and is doing well. When you give liquid morphine it only takes about 20 minutes to kick in and usually he will start to toss and turn and we know that he needs it. Well, he needed it by 2 am. This time instead of just tossing and turning, he was upset. It broke my heart as I tried to hold him and comfort him and found it fruitless. Twenty-two long minutes later, he was relieved and asleep.
I have moments when I stop and think about what he has to go through...through his eyes. He isn't scared of the strong chemo drugs or the duration of this fight against Leukemia. He fears the "pokes" when they need to draw blood or place another IV. He fears being woken up at night, even if it's just to check his blood pressure or temp. It helps that I know he is safe when he is scared, but it breaks you down a bit when you see his face and hear his 2 year old words.
I talked briefly with a dad on the floor and he said that he was hoping to get his 20 month old daughter off the floor and on another level for a change in scenery, for a walk. But, she won't keep her mask on, which protects her weak immune system. He said, well she's happy doing laps in a wagon, so as long as she is smiling. And, that's the judge of my days as well. If Ev is smiling and playing, I don't really care what his numbers are for that day or whether we hit a bump in the road. Seeing his smiles and hearing his laugh creates the best days.
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