It's always at the back of your mind. Is he too pale and in need of a transfusion? Is he crying because his sister hurt his feelings or because he is feeling sick? Is it time for his medications? There is always a reminder.
Such as the line of medications which he takes daily. Some of these are once daily, some twice, some need to be administered three times a day. One needs to be given twice daily on Monday, Tuesday, and Wednesday. The injection needs to be given when his ANC reaches below 500 and given until it reaches 10,000. Some need to be given with food, others on an empty stomach, some not within a few hours of each other. Some days I feel as though my whole day revolves around medicine.
Then there is his dual hickman line. It needs to be hep locked daily (the two blue syringes in the picture). Twice weekly we need his blood counts so I need the whole pile of supplies shown below in order to draw his blood.There is also a dressing change that needs to be done weekly to keep the area where the hickman line runs into his chest clean and sterile. That involves peeling off the old dressing, donning sterile gloves, swabbing the area with alcohol, repositioning the line in a loop, and putting a sterile dressing back on. We need to cover it when he takes a shower or bath to keep it dry.
There is a host of other issues that need to be dealt with as well. The odd thing is that while it dictates a lot of our day, it's become normal for us. It's just another thing that needs to be done during the day. Jacob takes his medicine like a champ, holds out his arm for the injection, and sits still for his line to be flushed or his dressing to be changed. I'm able to keep all the medicines straight without a chart and know what time he needs what and when he last had this or that. And because it is now normal to us, every once in awhile I'm almost able to forget that it isn't normal .