News of the day

Still no matches have been found for Ashley's transfusion. It is so unbelievable to me to think that it has gotten this hard. So unbelievable. The risk of giving Ashley an incompatible infusion is just too high. Even higher than the risk of having not enough platelets. If she were to bleed out spontaneously in an emergent situation is the only way anyone is willing to infuse an unmatched bag of platelets.

So...in light of this we, our team here, and our team in Omaha have all agreed to take Ash back home where she is most comfortable. Our ultimate goal is to save her line. It is the number one priority and so we are treating the infection aggressively. We have the ability and the equipment in our home to do exactly what is being done for her inpatient. We brought her over for a platelet infusion and it just hasn't worked out, but none of us could have predicted that.


Ashley's vitals signs are all very stable. She is no longer requiring oxygen support. We all believe she will improve in time. Its just taking a little longer and longer with each infection.

Her liver numbers are not good. This infection has hit her hard. Her bili is up from 1.6 to 20. She is glowing. Along with that high bili comes the side effects of severe itching, fatigue, and overall weakness. She sleeps a lot. We do not expect it to stay this way long term. Her history on Omegaven has proven that she does rebound once the intruding bacteria is killed off.

If we could find a match for her platelets we would infuse them. The problem we are having is that over the years Ashley's body has created several anti bodies that are actively fighting against the donor platelets. They have to test each donor's sample against her own sample and try to make a compatible match. Its so complicated. Many of you have donated and many more of you are willing. That act truly touches my heart. I don't know what to say. If you still want to donate blood it may match her and it may not but rest assured it will not go to waste. Someone will need it. Trust me when your child is in a position to need blood its the most beautiful gift you've ever received as you watch it drip into their body. It literally has saved Ash's life many, many times.

More time in our home with our little girl is our hope and prayer. More and more and more. Hopefully she will begin to perk up in the next few days as she realizes she's made it home once again.