Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Monday, February 20, 2012

Midnight Platelet Run

Having a midnight adventure at the hospital.  Not a big deal, Ty's fine, he just needs platelets so here we are.  Why does he need platelets you ask?  See the petechiae on his head?  Little red dots...that's blood, a sign that platelets are low.  He started to petechiae about Fridayish.  When his platelets are low he gets lots of little bruises.  He's had a few here and there so I knew a few days ago we were probably going to have to transfuse...I was just hoping he would last until we went to his appointment on Tuesday at Primary Children's.  No luck.  Tonight when I took off his clothes to put him to bed he had several more little bruises, and some new areas of petechiae.  He has also had real chappy-sore lips lately which he always gets when his platelets are low....and I don't really know if this is related other than the fact that crabbiness is also a sign of low platelets...but he has been crying in his sleep A LOT the past few days which is unusual for him.  I haven't been able to wake him up enough to tell me what's wrong, he just cries for a while and then calms down and sleeps for a little while, then cries some more.  I hope the platelets will help him sleep better.
So tonight when I put him to bed I called the on-call oncologist at PCMC.  Described to him Ty's symptoms and he agreed that we should probably get him in tonight.  Called the pediatrician on-call and here we are.  Ty was pretty mad that we were here, that I was putting numbing cream on his port etc until Brady asked if he should go find the gamecube.
Doing his fatherly duty and getting it all hooked up.  Ty has actually asked when he was coming to the helicopter hospital next cause he loves a particular game up here called 'Robots' from the movie.  (the helicopter pad is right outside the peds floor windows here...PCMC is called the horsey hospital cause it has a horse statue out front)
Ty's platelets were 8.  To put that into perspective, normal range for platelets is 150-450.  For Ty they transfuse when it falls below 10.  The past few days I've been having images run through my head of him getting a bloody nose in the night or just getting so low that he bled to death in his sleep....so this transfusion is putting my mind at ease.  You can see 'Robots' in the background.  He kept his eyes pried open till after 1:00am cause he loves it so much.  That's a pretty big feat for a 4 year old who's counts are low.
His weight is 35.4 which is great! Hopefully we will get out of here at 3am -ish.  It's so exciting to pull an all-nighter!!  Kind of like we are on an adventurous date or something : )  Really, how often do you get to blog and watch tv until 3am??
So he was almost done with platelets and suddenly his cheeks flushed and he had a weird rash that spread down his neck onto his arms and trunk a little.  They stopped the platelets and the doc came and looked at him, said it was common to have a reaction to platelets and had the nurse give him some benadryl.  Right after the benadryl was in he had a coughing fit and started shaking but it was really shortlived so I guess all is okay now.  He is totally stoned from the benadryl.  Hopefully when morning rolls around in 4 hours he will be back to normal and feeling a little better with platelets in him.  The rest of his counts are terrible too.  Sigh.  I was determined to not be a freak about everything now that he is in maintenance, but with ANC a big fat zero I guess we still have to be freaks.  Other counts HCT 25.9 (right above needing a transfusion) WBC .7, segs 6, bands 0 which makes his ANC .042, which rounds down to zero.  RBC 2.9, HGB 8.9.  ~sigh~  We head to PCMC on Tuesday for his regular monthly treatment. 

3 comments:

  1. Oh, Amy! I'm sorry it's still a struggle. Tammy's son, Connor had a platelet reaction a couple of weeks ago, too. That's scary! I'm glad he's okay now. I hope his counts will balance out soon. Seems like the Holy Grail of Maintenance is maybe not quite so holy, hmm? I think of you and your cute family often! I'll keep Ty and his counts in my prayers.

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  2. Oh man, so sorry. I've been surprised with Maintenance so far. Hopefully it just takes a few months to get their counts more stable. We came home from our vacation(ha-ha) last night and will find out where Avery's counts are tomorrow. Hoping Ty's little body recoveries fast!

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  3. Amy --- He is still the cutest 4 year old I know - I can say that now, 'cause Kate is 5!!! So sorry, but glad that it was an okay visit.

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