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?"

Saturday, October 4, 2014

Discharged-10/4/14

Last night's labs before treatment, his platelets were at a 4, so thankfully he went in to get some IVIG and high doses of steroids.

Brian stayed with him last night, neither one slept good, but who sleeps good in a hospital. Especially when they are coming in every hour to check vitals, since he was on the IVIG drip.

I went up there this morning, so Brian could go to work. He was finishing up the second and last bottle of IVIG (that finished up around 10:30AM) and then they started the IV steroids about an hour later, which took an hour. They took labs from him close to 1PM, and platelets went up to 16, not as high as I was hoping for, but it was enough to be able to get discharged.

We will have Molly, his nurse, come sometime Wednesday, and draw labs again. Hopefully there isn't a decrease again (which IVIG is only temporary, so I am expecting a drop again). And we will go from there.

I talked to Diana, from Chapel Hill, last night. And she said that they talked to the chemo nurse here in town, and he was comfortable with doing the Rituxan treatment for Jordan. So keeping fingers crossed Dr. Gold is okay with us doing treatment down here instead of up there. She also informed me I will be taught how to insert a needle into Jordan, incase he may need a weekly IVIG pump each week (I swear I need my nursing degree mailed to me for all this that I do for this child of mine). So that should be interesting. Also she is going to fax the paperwork back to Jordan's school on Monday, so he can start homebound school (teacher comes twice a week to keep Jordan caught up with school work, so that he doesn't get behind).

Thats pretty much it, I am exhausted mentally..so hopefully we have a quiet few days at home.
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