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?"

Monday, December 23, 2013

December 23rd 2013 Update

The doctor has given Jordan a private nurse that will come in weekly to do PICC line dressing changes and if needed, any blood work. Met her today, and much to my surprise, we went to school together (grew up together); so it was a relief that someone that I personally know, is caring for my son.

We had an uneventful weekend; but I could tell Jordan's counts were dropping. Which I was expecting, because the doctor now has him on a medication called CellCept (which is a medication they give to organ transplant patients). He laid around a lot, napped, his coloring would change from pale, to "ehh okay". Brian was able to take him out for about 2 hours on Sunday, to meet up with some friends for football and wings. That tired him out a little, but he was glad to get out of the house for a couple of hours. Also decorated a gingerbread house with the kids; so it was a laid back weekend.

Monday afternoon, his nurse came in; checked him over, did his vitals, took some bloodwork. The original plan was that if Jordan's counts were low, we were going to go into our local hospital to receive a couple of units of blood, and then drive up to Chapel Hill on Thursday for our appointment. Plans changed real fast. His Hemoglobin was 4.8 and his platelet count was 69,000 (normal count is 150,000-450,000). So they tried to call our local hospital to get us set up there, but our hospital did not have the resources that Jordan needed for treatment. So my husband and Jordan left late last night and headed to Chapel Hill to receive treatment. 

They get settled in around 10-11PM last night, and went ahead and started him on his blood transfusions. They also gave him a large dose of steroids. This morning, they started him on his IVIG treatment. They are going to closely monitor him throughout the day. Tomorrow morning, they will give him another dose of IVIG; they are wanting to treat this very aggressively; because his body is just eating up the blood transfusions they are giving him. The doctors are basically scratching their heads at Jordan's symptoms, because all of the bloodwork has came back negative. They cannot figure out what triggered this flare up. He hasn't been sick, he has no infections or viruses in his body; so they are just puzzled right now.

If all goes well, my husband and Jordan should be home later on in the day tomorrow. So yes, we will not be together for Christmas Eve, nor together Christmas morning. I am at home, with our other two kids. One, who is 15 and would understand if we needed to put Christmas on hold. But I have a 9 year old, that has been counting down the days, still believes in Santa, and wouldn't understand the concept of waiting. 

But, as much as it sucks; if this gets Jordan better, that is the ultimate goal.
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