At 4:30 this morning we were awakened by "Mommy, I'm leaking." Willem still has a stomach drain that drains into a bag but the connections are from different manufacturers and do not stay connected without copious amounts of tape -- which eventually loses it's hold. So... there was a mess to clean up this morning. Borrowing an idea from a clever nurse at HDCH, I splinted the connections with a plastic spoon and taped each section of the tube to each end of the spoon. It holds but I had to take it apart again to administer meds at 6am.
Thinking again how amazing my wife is to have managed Willem's care in my absence; the time involved; the lack of sleep; the uncertainties... Hopefully I can do the 7am battery of meds without waking her for assistance.
Oh I remember this type of medicine schedule too well with my daughter who had HLH (diagnosed at age 4, conditioning and BMT at age 8). It's amazing what we're able to do for our children. It's also hilarious how easily it is to forget ourselves. I had an antiobiotic I was supposed to be taking during this type of med schedule for Nevaeh (my daughter). I constantly forgot to take my own medicine. But I never once missed a single dose of any of her 15 medicines she took daily. Good luck...it will eventually become easier once BMT is over and his immune system kicks back in. I will keep him in my prayers for all the HLH warriors out there.
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