He was officially diagnosed in 2006 with ITP when he was just 6 years old, after almost 2 years of showing symptoms of what we now know, were low platelets. In December of 2013 his diagnosis was changed to Evans Syndrome, after almost losing his life, and battling a month in the hospital.

In "English Terms" with ES, this basically means his immune system will kill off his red blood cells, white blood cells, and/or platelets. Sometimes it can be all three at one time, or just two, or one.

In October 2014 he was also diagnosed with an underlying immune deficiency called CVID. Which means its a disorder that impairs the immune system and you have low IG levels. People with CVID are highly susceptible to infections such as pneumonia and other illnesses.

There is no known reasoning at this time to why either of these occur and their is also no cure at this moment; we treat with medication, blood transfusions, and infusions when his blood counts are low.

Only 1 in every million people in the world will be affected with Evans Syndrome; and only 1 in 25,000 are affected with CVID, my child is one of them and this is our journey.

For a more detailed and in "English terms" wording, please refer to this post "What is Evans Syndrome?"

Wednesday, December 25, 2013

Christmas Miracle Not Happening

Its been a pretty uneventful day; day was spent with Jordan receiving IVIG all day (high dosage of that). They finished that up around 7PM or so (the bottle of IVIG was giving them problems, so it ran over longer than it was suppose to). They ran a CBC on Jordan around 8PM, Brian got those results around 10PM; Hemoglobin has decreased again from 6.6 this morning, now to 6.3; hasn't decreased by much, but considering his Hemoglobin was at 5.8 when Brian went up there with him, Monday night...it looks like more blood transfusions are in Jordan's future for tomorrow; which means him not coming home (unless we get a Christmas miracle in the morning). His platelet count has increased (but thats not anything we have been worried about at all during this entire ordeal), but that is at 126K. WBC is at 1.5, which is not surprising, since his Hemoglobin is low. 

They just finished up around round of steroids, doing his Vincristine now (which takes like 5 mins), and they will pretty much leave him alone for the rest of the night (other than the routine vital checks every few hours). Brian said they are going to do another CBC at 9AM, so we should know more by noon tomorrow, on what is going to happen (either more treatment or being discharged). 

Please keep fingers/toes crossed and continuous prayers that we get a higher Hemoglobin number tomorrow, so my boys can come home, and we can have a good weekend at home. =)

1AM Update: They are going to go ahead with the blood transfusions tonight; hope to be done by 7AM, CBC around 8-9AM; hopefully that comes back with higher numbers so they can be discharged. Next update at noon tomorrow!

 Santa visited Jordan in the hospital
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