Crazy busy

I wanted to write about our last visit to the NIH just after we returned home, but it didn't happen. THe trip was flustered, they did not give us enough time, since they cooridinated the flights this time. It was so rushed and panicked, and next time I will not let that happen...
Jorden's fever's and pain started getting worse, more of them, starting in December...Dr. G_M decided to increase his dose of colchicine again, and again we immediately saw improvement, Now he takes .6 in the a.m. and .6 in p.m., it is the maximun dose for his weight, and we were cautioned to watch for signs of toxicity (haven't seen anything unusual, except for he is not gaining weight becuase his food practically passes right through him, fruits and veggies seem to go undigested, and he is ALWAYS hungry)...
his labs from that visit showed that his liver enzymes and potassium levels were too high, and his platelet count is still slightly elevated. Jorden's labs after that visit showed elevated ALT's x2, but his last set of labs were completely normal...sigh...it's so hard not to be concerned about these things. What caused his liver to be distressed? His proteins and amyloid levels were normal. WHat could it have been? Should we expect things like this to be part of our normal routine from here on out? Is it the medicine, or a filler on the medicine? I switched pharmacies, and they used a different brand of colchicine, and then his labs were normal. But now he is having a flare!
Jorden has been complaining of fatigue and more pain in the last few days, and he has had a lot of restless energy...last night he had a sharp, sudden headache just before bed time. A few hours later I could hear him sort of fuss and struggle and toss and turn, then he cried out to me. He still sleeps in our room although he has his own bed, I feel like I need to be close to him for nights like this...he was burning with fever (102.9) and his back and feet were on fire, his feet were red and a little swollen and he had near crisis-level pain in his spine again...his little heart was POUNDING. He gets tachycardia with every flare. Once in the hospital his heart rate was 195 for HOURS! I gave him a dose of codine and it kicked in in about 20 minutes, and I pulled him into my bed. Oh I hate these nights, his pain was so bad I couldn't even touch him and he could not get comfortable because of the pain in his back, he was curled in like the yoga childs pose with his hands around his head, rocking back and forth....sleep was his only relief thanks to the codine. He awoke still not feeling his best, he slept in until 12:00 p.m., and he was still in milder pain, and the fever was 99.9. His throat was dry...but by 3:00 he was perking up, the fever disappeared and then he was running around like he should be. THanks goodness these things don't last for weeks like they used to. I suppose he will always have flares and undesireable lab results......I don't hink I will ever get used to it though....
Now I have to tackle the upcoming appointments with his cardiologist, rheumatologist, and ear nose and throat doc again. About 2 weeks ago Jorden had the croup plus another middle ear infection in the left ear, I wonder if that triggered this flare! I hope the fever does not come back tonight.
Well, I have been giving hin fish oil, all sorts of digestive enzymes with anti-inflammatory enzymes and herbs stuff, plus organic, whold food multi vits. For the most part, on a daily basis Jorden is doing the best he's ever been. Thank you NIH!