So Friday after seeing the doctor Friday, they drew blood for labs and the PNH test. I kept calling back to see what time they wanted us back for a transfusion for Josiah.
I KNEW he needed a transfusion. I can ALWAYS tell when he needs either blood or platelet transfusions because he just behaves different. He's not than his normal happy content joyful easy going self. He is more cranky, clingy, uncontrollable, unreasonable, irrational, all around difficult, and sleeps alot. The past several days he'd sleep for hours all day long, wake up for a half hour and sleep again for HOURS longer, then take naps throughout the day and still go to bed early It breaks my heart to see him like this. It concerns me a great deal. He also cries and cried about his legs hurting. The doctors mentioned giving his leg a bone scan. Anyway for the PNH test they took 8 yes EIGHT vials of blood. The phlebotomist was all "8 vials? Isn't this kid anemic???" ;-)Turns out they lost the vials! I kept calling and calling and they kept saying they couldn't find the labs on file! ARG! FINALLY at 4 they located them and told me he needed a transfusion. "Great I'll bring him right over then." They mentioned how the Outpatient Infusion Center wouldn't take us that late which irritated the heck out of me since I had been calling since 2 trying to get him over there. They wanted me to come in on a Saturday at 10:30. I responded with NO we made plans and if we have to come in it will need to be earlier. So we made it for 8 am. It typically takes around 3 hours to receive blood. They actually had to admit us into the hospital We were admitted into the same room he had when we were at CHOC on January 8th! Weird. It took way longer than 3 hours. 6 to be exact.At least I got to rest/nap a bit while we were there.
EVERYONE was charmed as usual by Josiah and how easy he is. I hear all the time comments on how they wish EVERY patient was as easy as Jojo. It's because I named him Josiah Valor!;-) I got to speak to another Hematologist Dr. Buchbinder. I told him " you know we need a doctor like Dr House, would that happen to be you? " :-) He replied that NO, He's not house. He advised me to make sure we immediately got the other children tested to see if they are Bone Marrow Transplant matches for Josiah. he mentioned that each child of mine has a 25 % chance EACH (not combines as previously thought) of being a match. He said "you don't want to just keep on transfusing him because, we'll you just don't." I asked him "can you tell me the statistical data on graft vs host disease in exact sibling matches? Is the incident high or low?" He mentioned that it's hard to say because each case is different.
I am a planner so I want to know cold hard statistics. I want to know the odds on my son beating this disease. I asked if it is unlikely and improbable he'd get GVHD and he said "No it isn't rare, you really just never know why certain people get GVHD" I explained to him how disappointing this was to hear. I was really hoping for assurance that if we elected to go that route that our odds are good to have a positive outcome. I longed to hear him to say that the odds of Josiah suffering GVHD was minuscule.
When we FINALLY got out of there SIX HOURS LATER the airsoft party had already begun. Of course people were pretty understanding. It was SO wonderful, to be able to fellowship and see so many friends and their children enjoying themselves! My little lately lethargic Josiah was bouncing off WALLS with his new and improved hemoglobin levels. :-)
Here are just a few of the highlights.