Today we headed into Children’s to have the testing done for his kidneys and heart and meet with the genetics specialist at the Jimmy Clinic. We started with the kidney testing. He had to have some medicine put into his system to start and then 3 blood draws after to see how his kidneys processed the medicine. While we were in between blood draws we had an ultrasound of his heart done. It was a little difficult because of where the central line was placed but they got the pictures they needed. They did get the ultrasound jelly all over his freshly changed central line dressing so I was thankful we were headed to the Jimmy Clinic so that could be changed!! We headed back over for the scheduled blood draws and the nurse said it was hard getting the blood out of his line. After this news and seeing his line fill up I decided it was best to leave the room and let Steve handle this!!!
The Jimmy Clinic was all decked out for Christmas with a tree including presents underneath with a sign saying please take one for each child in your family. They also had pizza and desserts to enjoy. This visit was very long meeting with the genetics team and taking down a detailed medical history of Seth as well as me and Steve. Once again Seth won over all the doctors and nurses!
Before leaving we made sure his dressing was changed and we were on our way just in time for rush hour traffic!
During the week we had received word that the spinal tap and bone marrow sample came back without any abnormal cells. While this is great news it meant Seth will need to have a brain biopsy. That was schedule for December 27th because the neuro surgeon the clinic usually works with was out of the country. However, while Seth’s dressing was being changed I received a call from the scheduler saying the surgeon was back in the country and had an opening the following Tuesday. While we were looking forward to getting through Christmas before having this surgery it will get us a definitive diagnosis that much fast so we were off to pre op and surgery after the weekend.