I am starting this late, don't know why I didn't start this when Jordan was first diagnosed with ITP when he was 6. Told myself time and time again to get started on telling the story of his journey with having ITP (and now Evans Syndrome/ALPS). I figure this is an easier way to keep everyone updated about what is going on with him, especially since not all friends/family are on Facebook (which is where I have been updating everyone on).
Let me give a brief summary of what has been going on with Jordan the past 6+ years, for those that are not close to us. When he was 6 years old, he was diagnosed with ITP (Idiopathic thrombocytopenic purpura); which in English terms means his immune system was fighting off his platelets as foreign objects. We didn't have many flare ups the past 7 years, maybe once or twice a year, it would last for maybe a month or two, and things went back to normal.
Fast forward to the beginning of this month....
On December 2nd, a Monday, Jordan called me from school, complaining of a headache, not feeling well, could I pick him up. So I did, I figured he was fighting off the same thing I was (sinus cold). He came home, took a shower, got something to eat, and then went and watched TV in my bedroom, where he fell asleep. Monday night, the headache was almost a migraine for him; we had the lights off in the house, tried not to disturb him; gave him Tylenol every 6 hours (because with having ITP, he cannot have any NSAIDS). Tylenol was doing nothing for his headache. I told him to go to bed, and try to sleep.
December 3rd, the next day; went to get the kids up for school, checked on him; still complaining of a headache, but it was a dull one now. I decided to keep him home, and let him sleep it off, in hopes to get him back to school the following day. Checked on him throughout the day, giving him Tylenol every 6 hrs, making sure he had water, etc. Still that lingering headache that wouldn't go away (which I understood, because I had been fighting one for many days).
BTW, speaking to him now, he has NO memory of anything since he went to bed, after I picked him up from school on December 2nd 2013; he remembers going to bed after he came home from school, and images here and there in the hospital, but his memory does not return until he comes out of the PICU into a normal room on December 8th.
December 4th, Wednesday. Did my routine of waking up the kids for school, checked on Jordan; he was awake, laying in bed, but still complained about the headache. So I got him some water, Tylenol; and told him I would let him stay home one more day, if he was not better by Thursday, I was taking him to the doctor. I took my kids to school, and call it Mothers Instinct or what, but something told me that something was not right; that he needed to go to the hospital, it couldn't wait.
So I get home, and tell Jordan I am taking him to the ER, because something was not right. He argued with me about going, but I stood firm and said lets get ready and go. It took me almost 2 hrs to get him out of the house (I now know I should have called 911 and had the ambulance take him in-but I didn't realize how bad he was, until we arrived at the hospital).
Thinking back now, he was confused, wasn't responding to my simple commands of (put your jeans, socks, and shoes on); he was very jaundice by this point, and some massive bruises on his body (some I didnt even know about until he was in the ER and they were looking him over).
We get to the hospital, and he couldn't even walk at this point (whereas just 30 mins ago, he could walk), so I had to grab a wheelchair and help him into it. Get into the ER, and within 5 mins they whisk him away; because he could barely sit in the wheelchair. Hooked him up to the monitors, and his heartrate was elevated to 147, and his blood pressure was low (he was in respiratory failure at this point). They did a CT scan and an XRAY...XRAY came back okay, but the CT scan showed he had brain swelling, and a few small spots on his brain, showing possibly old brain bleeds. They advised us that Jordan needed to be transported to Chapel Hill Hospital (we live 2½ hrs away from there). Jordan was in and out, he didn't recognize me at first; they told us they were going to sedate him and place him on a breathing machine, to help him breath, because he was having a hard time.
So between December 4th to December 11th, he was in the hospital up in Chapel Hill; within a day he was off the breathing machine, but was on a lot of medications through his IV; received countless numbers of blood transfusions and IVIG treatment. Each day, he felt better and better (although his red blood cells were low); and eventually was diagnosed withEvans Syndrome. Which in English terms, his immune system is now not only fighting off his platelets, its now fighting off his red blood cells.
He was discharged on December 11th, with a RBC of 8.2; and we scheduled a follow up appt for the following week, back in Chapel Hill. They sent us home with a lot of prescriptions (including Prednisone); and he also received a dose ofVincristine (a chemo treatment) before we left.
December 18th-My husband and I drove the 2½ hr drive up to Chapel Hill. They had trouble getting an IV in (veins were basically weak, kept rolling); so they put in a PICC line to give him some relief. His counts were low (RBC was at 6.2), so we were informed that we needed to come back the following day to receive 2 units of blood. He received his second dose of Vincristine before we left that Wednesday. The doctor also advised us that they are pretty certain he also has ALPS (still waiting for confirmation on that test results, but they are 100% sure he also has that on top of Evans Syndrome)
December 19th-Jordan and I made the trip back to Chapel Hill, it was a pretty uneventful; his RBC had dropped more to a 5; he receive two units of blood; and we came home with plans to run another CBC on Monday, and had an appointment scheduled for the following Thursday.
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