May Infusion - IVIG

May's infusion started out a little shaky after we got our labs drawn  and his port was accessed for the infusion we somehow lost the little cap that keeps germs and bacteria from directly accessing his blood stream.  I have no idea how we lost it or for how long it was off, but the hem/onc staff was pretty concerned about this.  They became even more careful to watch for fevers today.  We would appreciate your prayers that there was no germs that made its way into his little body during the time the cap was left off.  They do such a good job sanitizing everything in the hem/onc unit but who knows what kind of bug could be lurking around the hospital.
We got to have our favorite male nurse, Aaron, today and between Aaron and the Oncology pharmacist we were able to come up with a rate that minimized the nausea, yet got us finished within 7 hours.   As soon as the meds got turned on it was hard to get a smile from him, but luckily his cool new semi truck/matchbox car racer kept him busy most of the day and provided much excitement amidst a yucky infusion.

We learned recently that there is a national shortage of the IVIG drug that Max has used. The hospital has made the decision to switch brands and hopefully this won't affect us, but obviously the hospital is trying to be diligent in their supply and making sure it is reserved for the worst cases. We are discussing the possibility of weaning him off of the IVIG soon (after discussion and sign off with all our team members).  We are a little nervous to do any more weaning when we have so many other fluxuating drugs in play and this has been the most consistent drug offering the least amount of long term side effects. Obviously if Max catches a virus or is in contact with a nasty bug we will need to get in for an emergency dose, but usually the antibodies can last in his body for up to 2 months and since we have been getting every month it might be okay to stretch it out a little. We are awaiting comment from our Boston Doctor whose wife recently gave birth to twins, so we of all people are happy to give him a little time off.  =)