Yesterdays infusion started off a bit rocky. We had to go to the infusion Ambulantory Center in Hemotology and Oncology (spelling is most likely way off on all of those.) We arrived early hoping they would get us in a few minutes early to get things going. The waiting room is remarkable in itself. Children, sick and looking as if they are victums of nuclear war. One boy was out of his mind. He could not sit. He could not stand. He needed to move. He need to sit still. The agony is so loud in these poor kids. It truly cracks your heart. Back in the infusion center the rooms are close together and only separated by curtains.
When they started getting us settled the noise of the center came blaring in to our little space. The boy next to us, also seemed to be out of his head, yelled. He yelled for his mom who was sitting right next to him. He yelled for the nurse. Our nurse proceeded to take Gary's blood pressure. It came out to be 155/79. Great and Yikes entered my mind. His temp was normal, his heartrate and respiratory rate was fast but fine. I told the nurse to please page the rheumatologist. They sent over a physicians assistant who covers the ambulantory center. Gary has had facial swelling the past three days especially around his eyes. His right eye really swells. She asked me all the standard pee and poo questions. What are his symptoms ect,. She started over towards Gary to examine him and immediatly asked "how long has his eyes been dialated like that." My heart sank, my stomach flipped and my brain broke into a sweat. (Yes! brains sweat!). She said she would go report back to Dr. Wallace. She returned quickly and said that the Dr. who was busy in clinic said to go ahead and start the steroids. The high blood was due to getting a funky pressure on the leg where they had taken it. The eyes were from benadryl. I looked at her with intense concern and kindly said, "I am not comfortable starting anything until the doctor comes here and looks him over herself." Which meant we would have to wait. Fine with me I thought. They were very good about be understanding. All's I could think was high blood pressure, dialating eyes, STROKE. Hello? But then I have to remind myself the only thing I did was give birth to the child. I didn't go to medical school and have years and years of training. That doesn't make me imperfect and it doesn't make them perfect. Such a difficult line to walk. We only had to wait 30 minutes and she came in and flashed a light in his eyes which were cleary completely dialated. (How I didn't notice it before was because I was to busy paying attention to the swelling around his eyes.) I asked why high blood pressure keeps us from being sent home a few weeks ago when we were admitted but its ok when we come in here? What if you run the steroid and then it goes up? That is already so high for a two year old! She told me I had to remember that he is already has 20mg on board. The swelling is from the steroid. It is to be expected. It's funny when they send in the PA or nurses who act like everything is alarming, get me all worked up. It's not what they and myself know, its what we don't. The doctor said that we will evaluate with the team next week about knocking back down on the steroids again because it is beginning to have a toxic affect on his body. It is all a double edge sword. Back off on the steroid, the disease starts to work, kick the steroid up, the side effects start kicking the crap out of him. The doctor finally got me where I needed to be in my mind in order for them to start the steroid. I told her that I noticed some arm weakness. She said it was from steroids, and he was having a tremor. No, that is not what it was. It wasn't. I have noticed he is getting slower and more owies when we are putting shirts on. Before they were not a problem. After the doctor left, I felt a bit more confident. They started his IV. That went well. I think my two year old is getting use to it. If that is possible. He still cryed and cryed. But he sat in my lap this time instead of being wrapped up.
Meanwhile, our neighbor who had a voice began yelling, "There is a baby crying! There is a baby crying!!". That is ok kid. You yell if you need too. The kid began vomiting. In between yelling he would scream, "I am not going to throw up again MOM! I am NOT!". I felt bad for him. I put myself as a adult in that chair and could only imagine having poisen pumped into body, to make me sick and throw up. I would put a kink in the tubing so it couldn't go in. The fact that I was nauseated already from the situation with Gary didn't help with the sound effects of the center.
Gary slept through his entire infusion which took less then 2 hours. Thanks for bendryl and tylenol. He slept the whole way home as well. We were happy to be home. Still swollen, but home.