Home, No easy journey but we are here!

We are home again. Yeah. Not an easy day. We were due for discharge this morning. Gary had other plans. After being on IVIG all night and 3 doses of steroids, ect., he decided to get sick. He woke up at 10:30 was up for twenty minutes, really fussy, wanted to leave. So I bathed him, then did as he requested and took him to the play room. He said owie owie owie the whole way there while riding in the stroller. Once in the playroom, he got out, looked up at me and motion to hold him as he said owie owie. Miserable. I picked him up, he layed his head on my shoulder and back to our room we went. He was almost asleep again by the time we got back there. He was pale. He looked terrible. I can handle my child being sick. I can handle my child having a disease and getting poked with needles over and over and over again. I cannot handle having my child looking the color of a corpse or close to it. I had the second of mini melt downs and whoever dared enter our room was not to leave as they were trapped in my words of worry, regret, as if I was staging of war with each person. Doctors and Specialists are kind and will listen. But I can only imagine that they must feel like a fly that flew into a spider web and got stuck. Luckily, I only spin my prey. I am a catch and release sort of girl. Each new nurse got to here how I don't think it is right he is pale and lacking energy all the sudden. They were warned not to send me another intern. (All the interns switched rotations, so I was not happy with that. I had developed a rep-or with the old ones and didn't need change. I do have to remind myself it is a teaching hospital. I respect that. Plus our new intern really looked like my baby brother. I couldn't help but put up with his lack of experience and pulled-from-the-air explanations. I spared him my wrath. Besides, I keep it inside). So after Gary's color continued with its white grayish appearance, I inform the doctors I was going nowhere. I tried the best I could to remind them that I longed for my own bed, and clean clothes. I longed to see my children and be with my family. I told them this to help them understand that I wasn't refusing to go home because I found pleasure in it or wanted to be a thorn in there side. I had genuine concern for his well-being. We hung out the rest of the day. Gary slept and slept. He finally woke up at three. He even slept through the doctors examining him. He seemed better but his color was nowhere near what I am use to. It is hard talking yourself in and out of things. At that point it was getting home and getting him in his own bed was in his best interest and mine. The doctors suggested maybe his ng tube was in to far or in the wrong spot, causing tummy pain. I suggested maybe it was to much fiber and laxative causing stomach cramps. They ordered a chest x ray and tummy x ray. It all came back fine. I have been thinking a lot about why he was knocked so far on his back yesterday. Maybe it has something to do with the methotrexate shot. I have been talking with Kya's mom, Kaylee, she mention Kya not feeling very good after those. Gary seemed to be doing that as well. It is just the whole concept I cannot seem to grasp. You come to the hospital to get better, not leave worse off. I am working on getting in contact with a specialist in this disease over in Chicago. I am very motivated especially after checking out. They discontinued Gary on his calcium, but the new intern could not tell me why. There were a few other adjustments that no one discussed with me, so that was a bit.......irritating. But I try to be patient. At this point, patience may not be an action I need to be putting out. It took awhile to get us discharged. My little sister was kind enough to drive all the way down to help me make a decision on whether to take him home and help us out the door. Childrens isn't always terribly helpful with that. Everything is based mostly off of volunteers. So if you ever need a place to donate your time, Childrens is a good start.