by Lillian Csernica on November 5, 2015
Michael and I are back in the UCSF Benioff Children’s Hospital Oakland. On Monday Michael’s R.N. noticed some swelling around his Baclofen pump. By evening a redness had developed. I called the surgeon, who told us to come to his Oakland office by 8 a.m. the following morning. We did, and Dr. Sun made space in his surgery schedule for Michael. That was a very good thing, because by then the pump area had gone all hot, red, and shiny. That meant infection.
Both the Baclofen pump and the catheter leading to Michael’s spinal column have been removed. The infection is being treated with antibiotics. Another problem is figuring out just how much Baclofen Michael must now receive via his G tube. That means Michael has to deal with at least some degree of Baclofen withdrawal, which is very unpleasant.
So Michael is back in the PICU. On the plus side, many of the R.N.s are familiar with him thanks to our spending most of the summer here. The social workers got me a room in the Family House right away, so I have somewhere comfortable to eat, sleep, and shower. I’m just happy we got Michael to the doctor in time. The last thing Michael needs is to become septic. That led to organ failure last time, so we cannot risk having that happen again.
Keep us in your prayers, folks. It’s just one day at a time until we’re out of here.