Waiting, waiting, waiting.
Today began with a ravenous Sam and a round of blood tests.
It is difficult for me to explain to your he trauma of the blood tests for Sam. The catheter and recovery were a walk in the park for him, in comparison to him having blood tests.
It all begins with the crying and begging when I tell him that they need to do a test. We only tell him once we are near the procedure room as soon as he sees it he knows why he is there. I sit on the bed with him between my leg and hold him, while he cries and begs for me not to let them do it. I try to distract him into looking away, telling him stories, singing to him and telling him that is will be all over quickly and he needs to hold still so it doesn't hurt as much. We have tried using toys, movies and all manner of other tools to help him, to no avail. When they draw tight the tourniquet, he begins blood curdling screams only stopping to breath in between each one and his little body strains against my hands. He will not look away, he wants to watch, no matter what I tell or ask him. After they have finished he continues to scream and then begins to shake even though they have finished, his face bright red, tears squeezing from the corners of his eyes. As they the room I remind him that is is over and whisper in his ear that they are all finished and we can go back to his room. The answer is no. I try to offer him things to cheer him up, the answers are no, no and no. For the next half an hour the answer to everything is no. Because it is now that he has control over what happens to him and he exercises it fully. Why shouldn't he after not having control over others hurting him? Occupational Therapy came to see Sam this afternoon and introduced him to Buzzy Bee who is going to vibrate on is arms through his blood test and try to help him manage the pain.
So then we repeat the process in another four hours because the blood test clots, of the medications aren't in range or they need a fresh sample for something.
Today we have also had some fun times. The Currumbin Wildlife Sanctuary had some animals downstairs that we got to see and touch. Little things that bring a bit of joy and excitment to so many kids having difficult days.
Please pray the Heparin stays in range now that they have increased the dose. No more veinous blood tests this visit please. INR finger pricks we can manage others we have just had enough of. I will not tell him to toughen up, that he is a heartkid and he needs to get used to it. Four year olds should not have to get used to such things.