Boo has been out of the hospital for almost 2 weeks, but is still very tired and weak. He is receiving all nutrition through his G J tubes. He has not eaten anything by mouth in weeks. His deep hacking cough is slowly getting better. His labs look okay. He is just very, very weary. The first few days from the hospital Robert and I sat with him around the clock. He had to be attached to his feeding pump 24 hours a day to put weight on him. We were afraid he would pull the tube out, so we sat with him in shifts, including overnight. Sleeping in 3 hour shifts is not good for anyone, but thankfully, we may have put that behind us. Boo is on a feed about 16 to 18 hours a day, but we turn it off at night. He has labs and fluids tomorrow and I hope we will see an improvement in his weights and his lab values. He is getting reassessed by a county RN in early October. We want him to switch to the CAC waiver. This is a county waiver that support chronically ill people in their own home instead of the hospital. Having some extra hands on deck at home would be incredibly helpful.
October 6, 2024, is the Twin Cities Marathon. As I mentioned in a previous blog, I am running this race to raise money for the Osteosarcoma Institute. The dream is to banish this disease forever. Thank you so much to all who have contributed to #TeamRavi. We are deeply grateful. If you did not see his link in the previous blog, I will post it one more time. September is Pediatric Cancer Awareness month. Please donate to our cancer warriors as you are able.
https://osinst.org/herndon-fundraiser/
Thank you for holding us in your thoughts and prayers and good vibes. We are hoping that Ravi turns a corner in the near future and starts asking for trips to Taco Bell. In the meantime, be good humans. Peace, Harriet.
Harriet's Hedgehogs and Autism Advocacy 