Day 19 - Watching movies and trying to get back on schedule..

We did get some sleep last night, but it was hard with Ryan's schedule being so backwards.  He was up around 5am, and then around 9am said he was tired and wanted to sleep.  I kept forcing new (and old) movies on him most of the day, trying to get him to stay awake.  Hopefully, he can get back to normal night and days...

The plan with the team is to just keep going, watching his counts.  His ANC came up a little and his blood numbers are holding steady.  The problem with his oxygen saturation seems to be resolving itself, as he didn't need oxygen all day today.  The doctors even took him off the heart monitor and only have him monitored at night for his oxygen... We tend to celebrate the removal of anything (wires, antibiotics, meds, tubes, holes, etc)

He did spend a little time finishing up Doc Oct's something with Legos today, which was a pretty big project.  He has a few more Lego's to work on for the next few days, in addition to a fairly large plane thing I've been holding back.  :)

He still complains about pain in his belly, but the ostomy site looks pretty good and the wafer is not leaking (which can be a problem).  We also changed his blood thinner medication from twice a day (Lovenox) to once a day (Arixtra), which makes me happy as it's a sub-cutaneous injection, and it hurts.   So, for now, I'm just grateful.  With the weekend coming up, I don't expect much to change.

Thank you all for the continued prayers and good thoughts!!

--------------------------------------------------------------

ANC - 106
Platelets - 35
Hematocrit - 22.2
Hemoglobin - 7.4
WBC - 0.3
Creatine - 0.2
Glucose - 111


Description of lab numbers, in layman's terms:
Blasts - roughly the number of leukemia cells found in the sample.  We want this to be 0.
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)
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.
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.

Comments

  1. Lois HillJune 24, 2017 at 7:22 AM

    Sometimes less is better !!! Glad he is moving the right direction. I can only imagine what you are all going through, the anticipation, the hope, the fears, and the strength you need to show Ryan--and you all do it gracefully (for lack of a better description!!) my thoughts & prayers are with you all every day--and you know we will pray for him (and all of you) at mass tonight. LUV U all

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