Tuesday, March 01, 2016


Abby's enterococcus bacteria.  For those of you who like this stuff! 

Homeward Bound!

So Abby gets to come home tomorrow.  We are so excited and know you are celebrating with us!  She will be on an IV antibiotic once a day.  They had to find one that was compatible with methotrexate, which she will be getting next week, and is effective in killing the enterococcus bacteria in her blood.  There's only one, and it is only given through the IV.  So a home care company will come with an IV pump and the antibiotic and show us how to do it.  If you look way back on this blog, we did this a lot back in the day.  Of course, we don't remember any of it it's been so long but we are hoping it comes back to us and that she doesn't unplug herself out of curiosity during the night like she did when she was 3.... kind of funny now but still gets my heart rate going.  She is bringing home a couple of respiratory devises to keep working on her lungs.  Her stomach issues are almost resolved.  Most importantly, she can keep up with her hydration without IV fluids.  Celestial Seasonings teas are our heroes right now, she is downing copious amounts of it since water tastes funny to her right now.  She will come back to the hospital for a few days starting next Tuesday for her, hopefully, last doses of chemo.   Then we get to rest for the weekend and start all the BMT workup tests the 14th.

On the BMT note, Anna and Lily were tested Friday for blood types and some viruses to help the doctor decide who might be a better match.  So.....drum roll please..... they are all exactly the same blood type (O Negative) and they have all had all the same 20 or so viruses, EXCEPT one.  Anna tested negative for the antibody and Lily tested positive.  Here's where it gets interesting! Abby tested negative last month but positive this month.  Hmmm.... it's a respiratory virus you get as a baby.  So, there thought is two possibilities.  A)She has the virus now since her immunity is so bad or B)she just has the antibodies from one of the blood transfusions.  They tested her further today (saliva, urine) to see if she really has the virus now or she's just borrowed someone else's antibodies.  Makes me a little weirded out to think of but it's the least of our concerns.

Things we are thankful for after 26 days of February spent with her in the hospital....
1. Children's Hospital factuality and staff
2. Sisters who are ready either way to donate, one if Abby has the virus, the other if she doesn't.
3. My folks heling out in person
4. All of you helping out from farther away.  Meals, cleaning, encouraging, supporting, listening....
5. Bath time
6. Abby is STILL smiling and shining God's light in all of this.
7. BBQ Pork sandwiches at the hospital
8. Panera when we get sick of hospital food

What are you thankful for as we head into Spring? We'd love to hear.  It's good for our souls!

Sunday, February 28, 2016

Abby's doing better

Just a quick update to say that Abby is turned a good corner.  Off most of the monitors, off of oxygen for now, and her fever is gone without tylenol.  Rough few days but she seems to be on the mend again.  She's coughing a lot but I'm sure it's helping to clear the fluid out of her lungs.

She's praying that we can get out of her soon. If she can get to 100 on the ANC she can hopefully come home and remain on oral antibiotics.

Thanks for all of your support.