Alex's First Infusion

With much thought, discussion, and prayer, Sam and I decided to schedule Alex for his first IVIG infusion. We were terrified to start, but really hope the doctor is correct about this being Alex's best option for a healthy life. We scheduled Alex to have his infusion on Tuesday June 7th. My great friend Shannon offered to take the kids for the day and Sam was going to have off from work. All was well, until the day before. We get a call from the home health service center telling us that they forgot to notify the specialty pharmacy to order Alex's supplies. Sam and I were quite agitated because we had already made arrangements for the day. His nurse had another appointment too, which was strange if she knew he was suppose to have his infusion at the same time. We haggled with the coordinating company to finally get Alex's date changed to Thursday the 9th. I was mad though because the coordinating company kept saying everything was set to go for Thursday, but the nurse kept saying she was coming on Friday. It finally took Sam calling and getting upset to get both people to agree to Thursday. What A Mess! When Thursday arrived, I was so glad the ,"Well if she doesn't show up" was not an issue. At 9:00, Alex's nurse showed up ready to go. She was extremely nice, and great with Alex. She was very patient with him and took things slowly. The hardest part of getting started was administering the premeds and the actual placement of the IV. Alex has had to take so much medication to try and stay well he just does NOT like doing it anymore. We had to swaddle him, force his mouth open, and blow in his face to get it down. For the Tylenol, it worked fine, but Alex threw up most of the Benadryl. He couldn't get anymore because there was no way to know how much had come out and how much had stayed down. Alex's nurse took her time looking over his arms to try and find a good vein. She had to draw labs before the infusion, so she wanted to make sure she only had to stick him one time. It was great because that is all she had to do. It was not a pleasant experience to have to pin him down, but I was so relieved it only took 1 try. After all that, Alex was exhausted! He immediately fell asleep. His nurse monitored his vitals every 15 minutes for the first hour, then every 30 after that, unless his temperature went up. It did twice during the entire infusion, but never very high. The second time his temp increased was because his Tylenol was wearing off. Overall, the infusion went very well. It lasted from 10:30 until 3:20, and Alex slept all but 45 minutes of that time. He only tried to pull at the tubing once, other than that he seemed to not mind it. I was just really glad when it was over. I think Alex was too! After his nurse left, he rested pretty much the rest of the day.