Hi All...Just wanted to let everyone know that Ethan is home from the hospital. He was discharged yesterday evening and is happy to be home. His nausea and vomiting continues but as long as we stay on top of the Phenergan-Ben he can sleep through most of it. Just really hate having him sleep all day everyday. I guess sometimes there is no good answer and you just have to get through it. I still havent figured out how he is going to do school work in his sleep??? Guess that is the least of our worries right now. Been so busy I havent even had a chance to touch base with his Hospital Home Bound teacher. Putting that on the list for first next week! He had an upper GI scope and the Gastroenterologist said everything looks good. Basically there is no gastro reason for his nausea. His full body scan revealed that the nodules in the right lobe of the lungs are smaller in size and the nodules in the left lobe, kidney, and spleen are stable. Good news that we are VERY thankful for! We knew that complete resolution of the nodules was unrealistic and that this would be a long process but we are definitely moving in the right direction. They sent him home on TPN, which is ensuring that Ethan gets his daily nutrition in the form of an IV solution that he receives 18 hours a day. We put it in a backpack with a pump and he carries it with him through the day. He also receives 12 hours of NG tube feeds at a very SLOW rate. This ensures that his gut stays active since he is not eating much if any food by mouth and his TPN is going straight into his blood stream. He started spiking fevers in the hospital but with a couple of doses of Rocephin those seem to have subsided. Ethan also received his last dose of chemotherapy on Sunday in the Interim Maintenance phase. We get a two week break then we hit the cancer again with the BIG GUNS during the Delayed Intensification phase. Prayers that this phase goes smoothly as his immune system will be very low and he will still be fighting off the fungal infection. I have a feeling it will be a balancing act between continuing to kill of the fungus and finishing off the cancer. We were so lucky to have family in town this weekend. His favorite cousin, Ashley even got a chance to stay the night at the hospital one night and kept him entertained! He also had some visitors from the Jacksonville Suns stop by for a visit. He was sleeping when the players came by but was awake for South Paws visit! Wolfsons Childrens Hospital is so awesome about having special visitors drop in to say hi. One day it might be the Storm Troopers and the next may be a division of Sailors from NAS JAX or Naval Station Mayport. You just never know. I think Ethans favorite by far is always the therapy dogs!! The pictures I have attached are of his daily TPN and the additives that have to be added before we can administer it and of South Paws visit. Looking forward to a quite week at home and hopefully no more hospital visits anytime soon!!
Posted on: Tue, 12 Aug 2014 23:01:19 +0000
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