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?"

Tuesday, February 11, 2014

Quick Weekly Update-2/11/14

Hemoglobin is 12.4 (was 12)
Platelets: 209 (was 195)
WBC: 5.9 (was 4.2)

So everything else is in normal range for a boy his age; Hemoglobin is not there yet, but another 1-2 higher and we will be good. Decreased his steroids from 85mg to 78mg; so hopefully no bad reactions, I am getting nervous as the steroids get lower because his emotions start going everywhere due to weaning. We had that moment this afternoon during PICC dressing change, but I don't blame the steroids on that, just him wanting to be done with all this crap & being frustrated (imagine tearing off a HUGE band-aid SLOWLY, while you have to keep whatever is in your arm INTACT and it can't move....yeah, its not the most comfortable thing to have done-the dressing change-nor is being the person doing the dressing change), and go back to some sort of normalcy until his next flare up (please lord give us longer than a few months to be in remission before the next flare).

When they called me tonight with the blood count results, I asked if his PICC could be taken out next Monday (when we see Dr. Gold for our checkup); she said she sees no problem with that, she can remove it right in the clinic room, but lets see what Dr. Gold says, said she doesn't think he will have a problem removing it, since Jordan has been in stable condition the past two months. So keep your fingers crossed! This does not mean the blood-work will stop, just means he will have to get poked just like everyone else; but he said he was fine with that, and his veins have healed finally.

Nothing else to really report on...did have a TINY scare last week, when I went to do his flush, there was some light pink blood that had drained down to his clamp line; it did this for two days (not bad, just a tiny bit, but enough to alarm me). I just flushed with some extra Hemp and he was good to go. Bad stomach bug going around here, thankfully Jordan has not gotten it yet, and keeping fingers crossed it stays that way. 

Appointment with Dr. Gold is next Monday, Jordan will also get his monthly breathing treatment. Lets hope everything continues to improve and we get that PICC line removed!
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