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, January 13, 2014

Monday Update-1/13/14

Jordan had his weekly appointment with Dr. Gold this morning. Everything went well, he is very pleased with how Jordan is looking and feeling. Said he has had a lot of sleepless nights because of him (join the club buddy-LOL). 

Lymph nodes are good, not swollen anymore; spleen is still swollen, but its slowly going back to normal (again, they told us last month that it could take months before its back down to regular size). 

They did some blood work to check his counts, but also to check his liver enzymes, etc. I do not have those results, I'm going with the assumption that no news is good news. I am anticipating a phone call tomorrow or so, just because Dr. Gold said if the blood work looks good, we will decrease his Prednisolone some more (right now we are at 60mg in the morning and 50mg in the evening-along with 760mg of CellCept a day, and the other med's he has to take because of being on Prednisolone). He also said if the blood work looks good, we will go down to once a week labs (right now we are at twice a week). So we will see how that goes. We are also at monthly appointments with Dr. Gold., instead of the weekly visits. Which means we can now see Dr. Gold here in town, when he comes down for clinic work at the hospital, instead of traveling all the way to Chapel to see him. Long as Jordan's counts stay good, they start dropping, then back to Chapel we go. I assume we will be back up there eventually, because Jordan still has a PICC line in., and at some point, that will have to be removed; but with the blood work needing to be done 1-2 a week still, it will remain in for now.

Speaking of PICC line, I got to experience changing the PICC line dressing today. Scary experience! They didn't do it at the clinic, and truthfully I wasn't comfortable having it done there anyway (its not like the clinic in Chapel-almost like a regular pediatric office). I had to take a crash course on changing it when Jordan got it placed in on December 18th (two hour crash course mind you); but that was on a dummy doll. The removal of the dressing is not bad, its cleaning and making sure the actual PICC itself doesn't move; that, and everything HAS to be sterile (its a must)! I don't think I did too bad, Jordan said I did good (LOL); I'll have Amber (his nurse) check it out tomorrow when she comes to see him; I think she will be pleased.

We just locked ourselves up in my bedroom, I got him comfortable laying down on my bed, with his arm propped up on a couple of pillows, and we took our time with everything; took me about 30 min's from start to finish. Now that I have done it for the first time and got that out of the way, I am pretty comfortable doing it now.

Next week (Monday), we do have an appointment, in the afternoon, for Jordan to receive his Pentam inhalation solution (300 mg into his lungs) with the respiratory therapist (here at our local hospital-should be in and out within an hour). He had this done in Chapel, the day after Christmas for the first time. Since his immune system is suppressed right now, his risk of developing pneumonia is higher; so we have to do this once a month (order is in for 12 months-so we will see if this is a monthly thing until December), to keep his lungs clear of any fluid, etc. I'm fine with that. Luckily he wont have to miss any school, since its a Holiday; next appointment after that is February 17th with Dr. Gold (here in town); of course as long as his counts stay stable. 

Will keep everyone updated as new news pops up; continued thoughts & prayers of course! ;)
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