I called Columbia today to discuss Byron's fevers. I called a general number with no idea if anyone would call me back. Within 45 minutes I had a call from a neurosurgeon, who said he would consult with Byron's neurosurgeon, who was doing surgery at that very moment, the day after Thanksgiving. When I thanked him profusely for calling me back so quickly and being so readily available he said to me "We've got your back." Phew - what a good thing!
Byron's fevers are all over the place today, 101, 99.5 and the up again. The doctor said to start a Tylenol regimen and see how he does through the weekend. They do not want to restart the steroids (thank God) and think it might resolve on it's own. The key is that Byron seems fine, happy and healthy, just a bit hot. His incision is amazingly flat and healed, he is not swollen too much, and the only thing that is a bit huge, is the lymph behind his ear. But it's not sore. So it's a mystery.
But now that I know that these big guns at Columbia have my back, and Grace is always present, I am much more relaxed tonight. We'll get through this.
Byron Pratt, age 11, has Cerebral Palsy (Right Hemiplegia) caused by a stroke before birth. In 2015 he developed seizures and a rare form of Epilepsy called ESES, neither of which responded to treatment with medications. On November 3, 2017 he had a Functional Hemispherectomy. He has had many other major procedures in his short life including surgery for exotropia in both eyes, tonsils and adenoids removal, Selective Dorsal Rhizotomy (SDR), Constraint Therapy, and heel cord lengthening. The recent posts are about the Hemispherectomy and what follows. Older posts about other procedures can be found earlier in the blog or by links in the sidebar.