Update on James
On May 1st, James had another seizure with a high fever (reaching almost 103 degrees Fahrenheit). After several telephone calls, we made our way back to UNC so they could observe him and trend his labs as well as get an IV started so he wouldn’t become dehydrated. Coming from personal experience, dehydration sucks. Anywho, his reticulocytes (the cells that produce red blood cells) were low as well as his neutrophils (the white cells that fight bacteria).
I’ve got to hand it to UNC. I was expecting them to send us home the next day and just say it was a virus and give him fluids, but they said they were keeping him so they could figure out why his labs were so low. Unfortunately, we haven’t gotten to the bottom of it yet, and after about four days, we were finally able to go home as his labs were trending in the right direction. He was also acting like his normal self, hadn’t had a fever for 48 hours and he no longer needed an IV. So now it’s time to pressure, I mean discuss this with his PCP and continue with trending his labs (more pokey pokes for little man, but he handles it like a champ. The nurses at UNC said he did waaaayyyyy better than adults HAH. He gets it from me [that’s my theory and I’m sticking to it! :)]). Like, he would stick his hand out knowing what was coming and just sit there and get his blood drawn like a pro.
We are working on ruling things out but still trying to get to the bottom of it. If anyone has any suggestions, please let us know!
Please continue praying for him as we try and get to the bottom of this and for Cory and myself as well as we continue to navigate advocating for him. Advocating is highly important but it’s also very nerve wrecking and it’s hard. Especially for those of us who are introverts and don’t like confrontation. But I’ll do it for him 100x over.
Okay, I think this one is long enough! Love you all and we cannot express enough how much we appreciate all of your support for this little one. We see, we feel it, and those prayers are working. Thank you! <3