Wow does that four weeks between infusions go fast. It started yesterday with the Teddy Bear. I got a call from the Child Life Specialists letting us know she was going to meet us here. She asked if we had been doing any medical roll play. Inserting a fake IV into a teddy bear's hand. I told her no because I don't want to remind Gary until it is necessary. There is no reason to bring it up mid month. I mean I could, we just deal with enough with the medicines. So yesterday we spent the day putting in Teddy's iv. Did it make a difference. Not getting here. It didn't stop the tears. I practically had to drag him this morning. My hands are full so it hard because he likes me to carry him. He gets in front of me and puts his hands up to stop me from walking in. He stayed outside. He wouldn't come in. I dropped everything I was carrying to go out and get him to bring him in. Big Aligator tears. Childrens is usually very quick. Luckily today they were. I have been practicing distraction technique with him which seems to work very well right now. A cool toy, fun bubbles, whatever it takes. It is amazing how many people step in when the IV is about to be inserted. This time Gary sat on my lap facing me so we were face to face. It worked very well. He still cryed but was again distracted with our faces in each others. The Child Life Specialist got his attention a few times with play dough. Our neighbor (another parent) blew bubbles, those ones that don't pop right away. He liked those. So we will keep working the distraction technique. Once he gets bigger I want to get him a pair of those virtual glasses you can play a movie in. I had posted about those before.
*Thank you to the nurse who suggested he be Buzz Light Year for halloween. It worked well, it really did. but I don't have Buzz Light Year in my arsenal of costumes. LOL I looked at her and in a joking manner said, "what do you think your doing". We laughed. Such wonderful people.
So the IV is in and he is sleeping. I asked about running labs to see if his body is making the b-cells that are responsible for inflammation that were killed by the Rituxan. I asked for this because of the intense itching and skin activity. The nurse was awesome about it. She got Rheumatology on the phone. Of course I got the new fellow. He asked what was going on. He is very sympathetic and said sorry we were still having trouble. I told him my concerns were minor but warranted. It was very nice because the last fellow was very non chalant about my concerns which got to be frustrating. I can tell this one is knew but at least he talks it out with me all the while keeping in mind I am a Mommie. I am not sure he fully understood what I was asking for. I am sure he understood but he needed to hear himself talk it out. Today labs came back pretty darn good. But the one thing I have learned from the past is that labs don't always follow what Gary has going on. Overall Gary is good. Small things bother me. Very irritable and itchy evidence of vasculitis. Tomorrow we come back for a clinic appointment to discuss. I venture to guess we will sit on this and give the tacrolimus more time to work.