Day 13 (I think...) - Still going...

I wasn't sure how the doctors were going to handle the hole in his belly.  Apparently, it's not that big of a deal and we're moving along as usual.

Right now, we are mostly working to get his counts back up (giving him blood and platelets, etc), and keeping infections at bay (we're still on Vanco, Merepenum and Micafungin).  His counts are still really low (ANC of 18 this afternoon). 

But, on the plus side, he feels pretty good.  Still pain in his belly (duh, there's a hole there), and a quick temperature (101 but dropped quickly back to 99).  He's also having some trouble keeping his oxygen saturation where it needs to be, so we're using a nasal cannula at night with a little extra oxygen.  But, when he's awake and up, his O2 Sat is great (about 97).  So, I made him get up and out of bed.  He sat in a chair and played with his Legos and watched movies for about 2 hours this afternoon.  :)

We also changed his ostomy dressing.  I wasn't really sure what to expect, but the team seems content with how the site looks.  The hole is about 3 cm across, and the intestine has dropped back down into the abdomen cavity about 3/4 cm.  The skin around it looks great.  For now, with his counts so low, we are not talking about going into surgery to repair or change it.  Just keeping an ostomy bag over it, and letting it drain. 

He's a little annoyed with it, mostly because the bag is irritating.  But he's being really good about it.  I really couldn't ask for better.

So, for now, just hoping counts come back up, the ostomy doesn't cause any problems and he keeps feeling good!  Thank you all for the prayers and good thoughts....

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ANC - 18
Hematocrit - 22.0
Hemoglobin - 7.1
RBC - 2.41
WBC - 0.3
Lymphocytes - 256
Creatine - 0.3
Glucose - 87
Platelets - 22
ALT - 55
Total Bilirubin - 1.0

Description of lab numbers, in layman's terms:

ANC -  This tells us how well his body can fight off normal infections... We want this to be greater than 500..  Normal would be greater than 1500.
Hematocrit/Hemoglobin (H&H)  - This is a number of how much blood is in his system.  His normal range is 28-32/9-11.  The numbers are linked, so they are usually referenced together.  We will transfuse him more Red Blood Cells if he gets below 21/7.0.  (this is the blood you donate at blood drives, and we expect to use lots of it)
RBC (Red Blood Cells) - The number of Red Blood Cells in his body.  Normal is 4 - 5.5.  He has always been low, so we are happy with numbers around 2.5.  This number will go down with chemo.
WBC (White Blood Cells) - This tells us how many white blood cells he has (in thousands).  Normal is between 4.5 and 10.  We expect this to remain low, between 1.5 and 2.5 for a while.
Creatine - This is a good number to make sure the kidneys are working.  Normal range is between .5 and 1.2... If this gets higher, it means his kidneys are struggling.
Glucose - This number tells us that the pancreas is working.  Some kids struggle with diabetes as a result of the meds.  We want to see this number remain above 60 and below 150.
Lymphocytes - Non-cancerous T-Cells and B-Cells.  Normal would be around 1000, so we expect this number to be low.  This is the number of cells that will kill off bad cells like viruses.
Platelets - This is the number of platelets in the blood, which helps with clotting.  Normal is greater than 150.  We will transfuse more platelets if he gets lower than 30.
Co-Ags (PT,APTT) - These numbers tell us how fast he clots.
Bilirubin (Direct/Indirect/Total) - Bilirubin tells us how well the liver is working.  Normally, these numbers are less than 1, which is good.  However, when the liver starts to be under stress, they may go up.  Total Bilirubin is the Conjugated (Direct) + Unconjugated (Indirect).  The doctors said these numbers might come up, as his liver is trying to process all the meds we are giving him.
ALT/AST - these are liver numbers, letting us know how much stress the liver is under.  Normal range is between 10-50.