Friday, July 19, 2013

blood work/blood transfusion

This morning, we had an appt to check Emma's blood levels.  We walked over from the RMH.  I was surprised that Emma walked the whole way.  But once we got to the room, she sat on Tyler's lap, closed her eyes, and stayed just like this for 20-30 minutes while we waited.  She looked so pale.

Then she finally moved a little and laid her head on his shoulder.  We couldn't tell if she fell asleep or not because she didn't move and looked like she might be sleeping.  Tyler decided to share a funny story about her, and she started smiling as she listened.  It was very sweet...and sad...all in one.  She was soooo wiped out.

When the nurse came in, she was a bit concerned over how sleepy Emma was.  Then the doctor came in, and she was also rather concerned.  Emma hardly woke up for them.  They went ahead and ordered blood before getting CBC results done.  They still did a CBC, they just weren't going to wait for the results.  Her hgb was 8.2 the day before.  So, odds were that her hgb might be around 7.8 or something.  That's low, but typically she doesn't get THAT wiped out over it.

We found out transplant is rescheduled for this coming Wednesday.  Our fabulous donor was able to quickly reschedule, which we are incredibly grateful for.

They were working on getting Emma in to the day hospital for her transfusion and sent us home to wait so that we didn't have to be at the hospital. 

Tyler carried her home from the hospital to the RMH:

Then they took a nap.

I wish Tyler could stay the whole time!!  (co-workers can't donate their PTO, and he can use the Family Leave Act, but he doesn't get paid for it...which we need.  So, he has limited PTO that he's trying to spread across the whole transplant).

We made it back to the hospital for her transfusion.  It's been fun all being together.

Oh, I forgot!  Her CBC came back while we were at the RMH.  Here are her results:

ANC was at 160.  That's crazy low.  Scary low.  Your ANC gives you a gauge as to how strong your immune system is.  Emma's is almost to 0.  To give reference, a normal ANC would be over 2000.  If you get sick, depending on the illness, typically your ANC will increase as your body sends out more WBC to fight it.  So, someone who is sick might have an ANC at 5000 or 8000 (totally varies).  But, here is sick little Emma who is fighting off an illness and her ANC is down to 160.  Every day, her ANC gets lower and lower.  The illness seems to be wiping out the WBC that she does have.  If she starts running a fever or showing signs of illness (because she doesn't show any!), then they would give her a shot of GCSF to make her body make more WBC to fight it off.  But since she's going to transplant, they will be destroying her immune system via chemo (yikes!), and so if we can make it to chemo, it'll be less for them to kill off.

Her hemoglobin came back inaccurate.  We know it's wrong.  Yesterday it was 8.2.  Her blood transfusion from three weeks ago (?) is wearing off.  It's been lowering steadily as the days go by.  But today it said that it was at 9.2...which simply can't be true.  This has happened two other times where she had weirdly high hemoglobin that we knew the test result wasn't accurate.  Once they retested to verify, and it was 10 the first test and then 7 an hour later.  Anyway, so instead of going off of the numbers from the CBC, they gave her blood because we know she needs it - they are basing their decision off of logic and off of her symptoms.  Someone explained if you are dehydrated at all, your hemoglobin can concentrate and give a false high...which could easily be the case here. we are hanging out watching TV and eating/playing, etc...while she was transfusing.

I like how I'm blinking and making a weird expression.  I thought they looked too sweet.  Especially Emma.  You can see her blood behind her on the IV.

We'll be heading home soon.  The transfusion is almost done!  :)

Oh, and they will be posting Emma's story on the Cincinnati Children's Hospital blog soon.  I thought that was cool.

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