NG trouble and home for a while!!!

Seth has had further trouble with his ng tube. It wasnt working correctly so one of the nurses came down to see what the matter was and thought the length was still incorrect. She remeasured and it turns out that it was a whopping 20cm's too far in. Seth is so scared of this ng tube now and it could have so simply been avoided had enough care been given in the first place. Obviously it needed to be pulled out and Seth did this himself. I'm so proud of him. Now he feels much more comfortable and things are now working well. I spoke with the BMT on Monday and they are holding off on transplant till the end of July. This is a six week wait and they are going to have to balance between the risk of Seth catching another virus and giving the cancer a chance to build up again. His 15 week treatment is now finished and normally they would be going straight to radiation and then transplant. In Seth's case they need to wait for two consecutive negative virus test results a week apart before they consider him free of the virus and would even consider a transplant. I was told by the BMT that RSV was the last virus they wanted him to catch as it has a high mortality rate. He can also get a negative result one week and a positive one after that. This is the reason they want to wait until the end of july - they want to make sure there is absolutely no chance he has any of that virus left before taking him into transplant. As the BMT like to scare me, they told me they have lost many kids even on ventilators from RSV and it makes it very clear in my mind that the decision to wait is the only way to go. The MRD results are back and they are negative which is exactly how they needed to be to continue to transplant. A great result that the doctors are going to need to keep that way until transplant and we need to do our best at keeping Seth free from any sickness. We have been able to come home now (since Monday) and we have our own feed pumps and feeds at home. Seth has 8 hours a day off his pump and it has been wonderful to be home. We go back to hospital Thursday for a 6 hour chemo treatment and hopefully we will get a better idea of how they are planning to treat Seth in the coming month and a half. If we are lucky we may be able to just visit once a week for chemo and checkup. We are clearing out of the unit on Thursday and the Leukaemia Foundation is going to try and get another one for transplant time. Now I am home I will be able to sort out the photo problems and I will get some up next post for sure.