Well, we had a scare on Monday morning. Luis couldn't move his entire right leg and was extremely sensitive to any sort of touch. Immediately I thought it was a bleed so I infused him right away. What was strange was that there was absolutely no swelling anywhere and I could easily bend his leg. What made him scream was when I ran my finger down his thigh. I didn't know what to think, but that maybe it was some sort of muscle bleed in his thigh. I took his temperature (rectal) and it read 104.7!!! I thought to myself, that can't be right. I grabbed another thermometer and it read 104.5 ....I packed a bag and was on my way to the ER as fast as I could. As we waited in the ER half his right leg starting with the knee began getting bright red and swelling. Doctors came in and had an ultrasound done to see if there was a clot in his vein or something wrong with his line (his central line was put in through his right groin and comes out on the side of his belly). Everything looked good. Finally the infection disease specialists came in and said it was a skin infection called cellulitis and it spreads fast. I don't know if I've mentioned that Luis also has a severe eczema issue. He said that he probably had an open area of skin in his knee and some bacteria got in. They took blood to send out for cultures. They couldn't get blood from his line so they had to find a vein in his arm. They tried the left arm one time and there was nothing then they successfully got blood from the right arm. They gave him Tylenol with Codine for the pain and started him on an antibiotic called Vancomycin. All of a sudden his face starts turning red as well as his hands. I lift up his shirt and he has hives all over. He had an allergic reaction to the Codine. They gave him Benadryl right away. At this point I'm so frustrated because I felt like...If it's not one thing it's the other. Oh but it only gets worse. He was wearing a long sleeve shirt so I couldn't see his arms. My friend went to go grab his left hand and he jerks back screaming. I lift up his sleeve and there's a huge bump all black and blue and he can't move his arm. Now I'm almost in tears wanting to scream because this poor kid doesn't get a break. He got a huge hematoma from when they poked him. That's never happened before. Not even when he's been poked like 4 times in one arm. Finally we got a room later that afternoon so we were much more comfortable. Luis also feels better when we're in a room. He's been there so many times it's like our second home. We have a crib, sofa bed, bathroom with tub and shower, and a huge plasma tv. Luis loves watching Elmo while he's there. This was probably our shortest stay ever. We were only there for 3 days which was great compared to 3-4 weeks like every other time. By the 2nd day on antibiotics, he was feeling so much better. He spent his time riding a little car all around the 3rd floor (wearing his comfy cap of course) and enjoying whatever activities they had planned for the day...except for the magic show, the clown scared him. lol. I spent my free time helping out the art department for an upcoming show/fundraiser. Well, were home now. They sent Luis home on an oral antibiotic for 7 days. I have to speak to his 4 amazing hematologist doctors on Monday about what the plan is going to be for Luis. They've already told me that he's gonna be a "special" case. In more than ten years that the doctor's and nurses have been there they've never seen a hemophiliac as often as they've seen Luis in the past 18 months. We're going to try what they call immune tolerance. It'll take a couple of months, but hopefully it will get rid of all his antibodies. If it works out, we'll be able to do prophalaxis and infuse him only 3 times a week as opposed to every 8 hours. The docors say it will let him have a more "normal" life. All I can do is hope for the best.
