Gone Fishing

Time to catch up again....  Since Annie needs to stay close to the hospital as we don't know when she'll have a "bleeding event" and need a transfusion, there are no plans to travel this summer.  However, considering being her caregiver is a 24-7 job, a little R&R is in order.  Thus we must split up so as to keep one parent on duty.  Katherine and I took our break last week so, although I'm behind on the updates, I'm caught up on sleep.  Thursday's appointment required hmg as it had dropped into the 6 range.  Platelets were 6,000 but, again, they don't want to transfuse those unless she is having a significant bleeding event.  Her next labs were for Monday and hmg 8.9, plt 6000, ANC 1200.  No transfusion but she did have a nosebleed that evening that took four hours to contain and poor Tom was on his own.  They increased her cyclosporin levels so another poke Friday to check those values.  We've kept her nose to a slow ooze or nothing and her mouth seems quiet at the moment.  She has been feeling pretty good and keeping up her activities for the most part.

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.

The Little Dutch Boy

You would think Annie's body would want to keep its blood on the inside like the rest of us.  I mean she has no platelets, it shouldn't go bleeding all over the place because it cannot be stopped.  However we get one spot plugged (teeth) and the next one seems intent on springing a leak (nose).  We thought we had the nose thing under control.  We humidify her room each night so its like a tropical jungle - dripping with moisture.  She slathers her nose with vaseline to keep it from cracking.  She sets her watch to go off every twenty minutes all day long to remind her to drink.  We go ballistic when she touches her nose, which is hard for her not to do as it gets caked with dry blood.  But since the teeth cleared up the nose has been a real pain.  Back to waking up with blood everywhere.  Thus we're at the hospital for platelets today.  However the efforts with stopping the gum bleeding and the prior nose respite had given her hemoglobin a fighting chance.  Even today we are able to hold out.  Plt at 7000 and hmg 8.2.  Not a bad drop from last Tuesday.  If we could just plug the dyke!  So the plan from here is ... first figure some way to stop the bleeding, then a blood draw and probable hemoglobin transfusion Monday and, hopefully, hold out until next Friday for platelets.  Stretching out the hemoglobin transfusion means an alternately quiet then cranky child until then.  Must practice my positive thinking, "I'm so glad she'll be cranky for the next six days because ... it will help build my tolerance for cranky people."  Hmmm funny how I missed putting that goal on my bucket list!

I am the walrus

Time to catch up....  The dental visit went well as these things go.  Annie was concerned about the pain but decided to forgo the nitric oxide and tough out the tooth removal.  She was pleasantly surprised how easy and low pain it was compared to her other regimes.  Score one for the dentist.  In the mornings her pillow continued to be relatively free of blood stains and she seemed to keep her hemoglobin around better as evidenced by better moods, energy and color in her cheeks.  This observation was confirmed when, on her Tuesday blood draw, she still had hemoglobin of 10.1.  The platelets were 7,000 so we decided to transfuse to protect the hemoglobin.  Luckily that means only a few hours at the hospital versus the seven to nine when she gets both transfusions.  Also that high of hemoglobin allows her to go until next Tuesday before another blood draw.  Since then she has been attending summer camp where she helps younger students as a TA and takes a woodworking and an archery class.  She really enjoys archery as she hasn't been able to participate in most sports due to her need to be kept from getting hit by balls or people as well as her low energy.  So until next Tuesday hopefully the only pokes will be on the bullseye!