Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.

Saturday, February 11, 2012

I'm Leaking

The home care nurse arrived at 6pm last night and managed to overwhelm us with equipment and medications but with good notes and practice we'll get the hang of it.  After the nurse left, I hitched up the sled dogs, faced the blizzard, and went back to HDCH to pick up Willem's medications; a whole grocery bag full of 'em.  Erin and I got Willem comfortably in bed and administered his medications and managed to get ourselves in bed shortly before midnight.

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.



1 comment:

  1. 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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