Then trying to figure out viruses with a child that is immune all messed up is like being squeezed. What if its not a virus, what if its something else. What if its an infection? What if a flare? What if it his port? In my mind my face is going in every direction while my head stays still. Drives you crazy. Then if it truly is a virus, what if I catch it? Am I feeling sick? I think I am feeling sick? Does my stomach hurt? Scream STOP. Get it under control.
Last night Gary popped up with a I don't want to eat dinner. Fine with me. No dinner, nothing else than. Later in the evening I offered again. Still a no, and I have a headache. I get this often from my child. He does not like going to school so much he will set the stage for the next day. So headache complaints must be at least 6 or 7 times before I will pay attention to you. This time however, he said "I'm cold". Then violent shaking, headache. I gave him tylenol of for the headache. We covered him in every quilt our friend Sue has sewn for us. He really started to feel unwell. The staging for no school the next day was going a bit far. So far that this is the real deal. And just like that 20 minutes later 102.6. Blankets off, but I'm still cold. No vomiting, no action at the toilet. He was miserable. It took longer for the tylenol to kick in than I thought. He finally fell asleep later that night with a washcloth over his eyes. I figure I would call the doctors in the morning to report. Luckily the severe symptoms have subsided. He woke up the next morning, better but really tired. Achy tummy.
In February Gary had his first round of plastic surgery. They removed three calcium deposits. One from each elbow and the one under his chin. It went pretty well. Healing was a little tricky, we knew it would be. When Gary came out of surgery they told us his skin is thin from all the years of steroid use. They double nylon stitched him closed to ensure the incision stayed together. We did go on some antibiotics because we suspected a little bit of infection but other than that they look beautiful!!! It is definitely tough on him but so worth it in both our opinions. I know my son feels the same way. Monday we have our post op appointment. We will find out if the surgeon is willing to do more or if that is it. Right after that surgery, while Gary was still under, they ran him thru the MRI. NO evidence of muscle inflammation. So that was terrific news! His labs have been fine as well. Nail capillaries are pretty nice looking so all signs are pointing to lets pull back slowly off of some of these medicines. I can't really say that with extreme confidence because it has been a long six years of this dance. I don't mean to be negative but the been there done that comes to my heart and mind. And the not best part of this whole thing is even if we can wean him off medications, then you have sit there and worry he will flare again and you have to start all over again? I mean, I have known this all along but I.....wait...what?