In a pinch

Annie did not turn out to have especially low energy or moodiness and, while we were pinching her nose off and on all weekend to control bloody noses, she didn't have the usual signs of extremely low platelets.  Thus we decided to forgo a hospital visit Monday and instead just have her blood drawn and tested locally.  Sure enough her counts were still high enough to wait longer before transfusing.  Hmg was 7.1 and plt 11,000.  While nothing to write home about, the slowed rate of decline is encouraging.  It has been three weeks since she's had a hemoglobin transfusion and we were barely making it a week at the height of her bleeding events.

Our current focus is how to prevent bloody noses since we've had to pinch upwards of an hour in the middle of the night to get them to stop and that's no fun for anyone.  After getting up and down to pinch Saturday night we knew we needed to step up our efforts.  We brainstormed a list of everything we could do to prevent a bloody nose including having someone watch her every waking moment, as she seems to be unconsciously upsetting her nose.  After laying out the entire plan I head off to sit in her bedroom and wait for her to wake and just as I approached her room I heard her blowing her nose in the bathroom.  Noooooooooooooooooooo!  All that pinching the night before and the healing time after was now wasted and we were back at square one needing to pinch and then let the nose heal.  Mind you she has been instructed not to do this kind of thing however it is like telling someone not to itch a bug bite.

So we began nonstop monitoring Sunday to make sure she didn't touch her nose in any way.  We wheeled her humidifier around as she went from room-to-room.  We drilled her on not touching her nose without speaking with us first.  We cleared four hours then six, then, when we weren't expecting it, she came flying across the house running after a friend and being rambunctious.  Not a bad thing, unless you are trying to keep your body quiet to let your nose heal.  So, sure enough, shortly after it started bleeding again.  Humph.  Luckily we contained the bleed with less pinching and it has been only short, infrequent episodes of bleeding since then.  The best moment was last night when around 2 AM she called out, we spring into action, rushed to her room and she calmly asked, "May I blow my nose?"  No blood, just the question.  Regardless of the time, we were happy that she was getting with the program.  I can't help now but wonder how many of those nocturnal bleeds had been absentmindedly provoked.  So we're tiptoeing until Thursday when we go to the hospital in expectation of needing a transfusion.