Monday morning was a difficult morning. Still no answers and all the while trying to be supportive not only to Julie but also to a 4 1/2 year old who just doesn't understand what is going on.
After a trip to take Kaleb to school, a visit with a good friend at Starbuck's or as I might refer to it, me crying on the shoulder of a Barista friend, I ended up back in the NICU and Julie and I took hour shifts holding Karsty and giving him as much love as we could.
About mid morning, we had a visit from 2 supportive friends, Brad whom we have a decade of friendship with and Gavin whom we don't know well but are appreciative of his support (and comical relief of our friends in the yellow hospital gowns that they were required to where). They offered both support through their presence and offering words of support and prayer and then we went back to holding our little guy, not knowing if we had a little amount of time or a great amount of time with him.
Later in the morning we had another visit from the AZ family and while we were in conversation with them, the nurse came in and cleared the room except for me and Karsten (Julie was with her doctor) My heart leapt with fear at first, but the nurse quickly said "you aren't out of the water but this will be Good News." my heart settled.
Our Doctor came in and began to explain what he thinks is going on in terms that I might understand. His diagnosis which is going to be either confirmed or not through blood tests in the next few days is a disorder called, "Neonatal alloimmune thrombocytopenia" (now I am not a big believer in Wikipedia, but this will somewhat explain it to you http://en.wikipedia.org/wiki/Neonatal_alloimmune_thrombocytopenia) What he thinks is happening is that Karsten's platelets are different than Julie's and somewhere in the process of pregnancy, some of Julie's antibodies slipped into Karsten through the umbilical chord. Because Julie's platelets are negative and Karsten's are positive, the antibodies are attaching his positive platelets. The good news is that Julie's platelets cannot survive forever in him (maybe 6 months max). the other good news is that they can transfuse negative platelets into him and if his body accepts them, Julie's antibodies should not be able to kill them off.
So to confirm this theory of the Doctor, they have taken blood test from all 3 of us to see if this is happening. If so then he thinks we are on the right course and in his experience with this disorder, he has seen 5 children go through this and make it through. Once the antibodies are gone, it should be done and he should be a normal infant/toddler at that time. If the test don't confirm this then he could be back to the drawing board (but he seems confidant)
The next step for the day was a platelet transfusion and then 8 hour of waiting and holding him to see if the count goes up. As of Midnight on Monday he was up to 10,000 and even better news at 4am Tuesday morning it had grown to 11,000.
Of course again we wait, but this time with a greater understanding and a wonderful support system of friends and family. Our goal is to update daily on this blog to keep you posted and if we don't return calls or texts very quickly, please understand that we are appreciative but we don't always know what to do.
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