IVIG Infusion/Rash?

We hope that everyone enjoyed their holiday. We are very thankful for all of the progress we have made and were able to spend our first thanksgiving in two years at home with family. It was a bit disappointing since my sisters little one got sick and they could not come but we enjoyed the company of family and ate a lot and played. The photo is my gram with some of her great grandchildren. A beautiful site. I remember last year at this time and how David and I felt so sad and alone as we sat in simons hospital room eating the turkey I had prepared and brought down to the hospital for us all to enjoy trying to make the best of it. It made me so thankful to be home but it also made me sad for the many families spending the holidays in the hospital. I have two families that are close to my heart at Children's right now that experienced this yesterday and I ask for your prayers for healing for one families son and another's daughter so they are able to be home soon . It is easy for us to go on about our days and not think of those in situations like this or not know what to do to ease the pain because without actually being in someone's shoes you cannot possibly imagine the grief, worry, sadness and isolation you feel. I ask that if you know anyone ill or that has an ill family member to make an extra effort to do something of comfort for them without asking their permission. Bring a bag of groceries, offer to watch their other children, run an errand, just listen with a sympathetic heart and say "I don't fully understand but I am here and I feel so bad for you". That is all anyone wants. In this time of year when we all feel compelled to give. Remember those closest to you and think of what might help and if you can reach out to those you don't know.

On our healing front Simon is having a bad reaction I think to IVIG. I am disappointed as we had switched brands one or two infusions ago and I thought he was going to continue getting that brand because we saw no reaction, at least this is my memory of it, and half way through the infusion Monday I noticed it was the other brand. I was reassured by the NP that this was the one we used as she checked with pharmacy but on Wed, Simon started getting the red welts and now has them on his legs, arms, face, lips and even his ear and some on his back. They are growing in size and I don't understand how this becomes the process of it all. It is upsetting to see him dealing with it and itching and bothered by it all. I have to take him back in on Monday for another IV infusion, pentamadine and will probably get the vntrs then as well. Please pray for Simon, pray his skin resolves quickly and his vntrs are amazingly high of donor cells in all areas. Enjoy the long weekend. Happy Shopping, Happy Eating. Tracy and David