I am so glad to be home. I am so tired. I am so blessed. Thanks to McGuire's baseball team and my momm and daddy I don't have to worry about dinner.
I still can't believe we had to go back to the ER. I still can't believe they admitted us again. I suppose the point is we are home but it is still..............unbelieveable. Gary is resting right now. He is on and off agitated.
This time we had a few problems with IV's. We were blessed with our own room at least which made things much easier. In the ER they put the IV in the top of his hand. It was in most the day before they hooked it up. The nurse said she thought it "blew". I never picked up on that during any episode of ER but I am pretty sure I know what it means. They knew something wasn't right because everytime they started the IV he cryed and cryed. They would not take the old one out until a knew IV was put it in. They wrapped him in a towel securing his arms and hands. (This is so not easy to type). Starring into my beautiful babies green eyes, with his blonde curls, with an intense pink face and chubbing cheeks, drawn down mouth- nearly broke me. Ok it broke me. He looks at me like "why, why, what did I do wrong" look. Panicked, frantic and looking betrayed. He was hot, intensly sweating. The feeling in me was to go, go away from yourself to get thru this for him. I tried. The first jab his teeth clamps down and he screams and his body jolts. His body is hot and the only think I can do is look at him face to face. I felt like I needed them to put an iv in me too so it was fair game. The nurse moved it around in his hand, searching for the jackpot that never came. He finally took it out. I wanted to be mad but felt frozen in total fear. How do I get my baby thru this because he is going to do again. Holy God he is going to do it again. I found myself panicking how do I ask him (the iv guy). Another jab, sweating and screaming. I was waiting for Gary to vomit. I could feel his little heart pounding thru the towel. You would think they were sawing his hand off. It didn't matter what they were doing. They might as well. The last couple searches for a vain was too much. I barried my head in Gary little neck and cried. I felt defeated. I felt I let him down for crying. When we got back into the room, our family was waiting with open arms. Gary and I just looked at each other and cried. The look on his face was of relief. Relief that if Mommie is upset, then it is ok that I am too. I expected it to be more fear because I was crying. But it wasn't. The nurses pulled me aside and explained how the next go around I should stay out of the room. That was a half and half feeling. I agreed but didn't want to abandon him. Standing outside that room I felt somewhat like a coward. I felt helpless as I heard the nurse tell him in an almost adult fashion (loudly over his screams) "You are doing good. You are almost done. You are doing great. You are going to be Ok." I was holding onto my husband, pounding the ground as I listened to him from behind the door. I prayed. I prayed for it to stop. I heard them saying, were done, were done. It was driving me crazy. If you are done, then give him to me! There bursting out from behind the door of tortune was my baby. My baby Gary. His chubby arm wrapped around my next. I felt his sweat soaked curls stick to my face as my heart broke. He had those intermitent after burn cry breaths. His yellow hospital pajama's soaked.
He calmed down and we finally got the steroid going. After that he slept through the night, even through vital checks. We were all exhausted in every sense of the word. It was nice to have my family there. It feels weird, but we all feel better together. Visiting hours were over at eight though. We were hoping to get to go home by Sunday. They told us they would run is last steroid dose at 2 and wait two hours to make sure he didn't have any reactions, then home. The family even planned a special dinner over at Grandma and Grandpa's. They waited and waited. Gary didn't do as well with the last dose. He seemed to be feeling ill and highly agitated. His blood pressure shot up to 163/74. The nurse came in and dropped a hint. "Well, if you get to go home tonight". My husband and I dropped our luggage. We both knew we did not want to take a sick baby home, but our cherish family gathering was waiting for us. His blood pressure warranted another over night stay. So we called the family and delivered the disappointing news that we wouldn't be coming home again. Alyssa came and changed places with Rob so Rob could go to work the next day. This is quite the experience for the entire family. Gary slept through the night and they ran blood pressure medication in his iv throughout the night. By morning he came back with a bp of 131/48. I thought that was high but they said it was fine. It was once again, good to go home! Gary is still having tenderness in his hips. It is difficult for him to bend down and pick things up. That will improve with time. The doctors suspected that we may run into more symptoms and more progression of the disease because he had such a sudden on set of it. We will have deal with what comes. Gary is having constipation issues has I mention in my Poo Blog. They explained the disease makes not work the way he should. We need to be careful and keep things moving with softners. They sent me home with a giant bottle of it. I found it kind of comical. I envisioned myself trying to wrap both my arms around the bottle, trying to fit it in my car.