My last blog had stopped at when Jackson had been in the er for the second day in row. He had been diagnosed with lyme disease and got a iv of antibiotics, fluids and morphine. Then he was sent home. He was still in lots of pain. Everytime I tried to give him pain meds, Zofran and his antibiotics he would vomit. He was up most of the night. So the next morning (Tuesday ) we took him back into emergency. They again hooked him back up to a iv. They did blood work again and his white blood and crp was extremely elevated. So at that point they decided to do a spinal tap and ct scan. Results were that the lyme had gotten into his nervous system and in the spinal fluid and causing swelling. They call it neuro lyme or lyme meningitis. It's symptoms mimic meningitis but is not the same as the one you hear of in the public and is not contiguous. He was then admitted to icu. He continued to receive iv antibiotics, pain meds and fluids. He was in the icu for 3 days and then discharged with a picc line and receives antibiotics daily through that at home. He lost a total of 6lbs, which may not seem like a lot but he is a very small boy to begin with. I have never seen him so sick in my life and in so much pain. The spinal tap was very emotional for Mike and I. Jackson got a concious sedation so he couldn't move but he could see and hear. And Mike and I both got to stay in the room but it was extremely hard to watch. Looking back on the whole ordeal I held up pretty well during it but now looking back makes me extremely emotional that he had to endure all that. He still has the picc line. He is looking a lot better and has gained 4lbs back. He is still very tired all time and spends a lot of time laying around. But hoping soon he will get his energy and back to his normal self. Hopefully this whole ordeal is behind us. I never want to experience this again.
4 months ago