It has been 4 weeks without overnight pump feeds. Before we stopped these feeds Jason was doing really well with his weight even gaining a little weight and we made the decision to stop the overnight feeds. I am still pleased with the decision although I do have my moments where I worry about him, I worry whether I am doing the right thing, I worry about his weight and his nutrition but I do still feel it was and is the right decision. I want this feeding tube gone and will continue to do everything in my power to get there.
Polygam (Jason's medication for his immune system) was last Monday which unfortunately was 5 days late due to no isolation rooms. Again I have learnt that Jason cannot go longer than 3 weeks without his medication because he usually starts with symptoms of some sort. He started with fevers and nothing else really telling us what was wrong but by the morning polygamy was due in hospital we found out what the problem was. He had fevers the whole of Sunday as I said with nothing else and Monday morning he started with really bad watery diarrhea. The kind of diarrhea that resembled rotavirus. So anyway we were in hospital and with polygamy I knew it would be a really long day. Jason's pediatrition did all the usual blood tests, urine tests and stool tests. We tested for everything - full blood count to check whether his CRP levels were elevated indicating a bacterial infection, stool tests to test for rotavirus, adenovirus, salmonella and E Coli, urine tests to check for a urinary tract infection.. The whole Monday poor Jason had fevers and really, really bad diarrhea. I was going through nappies and wetwipes like water. I would just change him and would have to change him a few mins later. We made the decision to start his polygamy even though he was sick as it would help boost his immune system and help his body fight. Because Jason was not well, we made the decision to stay overnight and we ran the iv rate slowly as there was no rushing out of hospital.