Jason was discharged on Wednesday last week. The nausea and vomiting had stopped, the diarrhea was still there but no reason why I couldn't manage it at home. We were managing feeds again and he didn't need his drip and of course we have the feeding tube. As Dr. P said the diarrhea could be there for weeks and of course Jason has chronic diarrhea anyway and on any given day we have to change him about 6 times anyway. I kept Jason off school the Thursday and Friday and gave him the weekend to recover. He returned back to school yesterday and we are back to our old routine. Jason had a good day at school yesterday. I always get nervous as I often get a call around 10am which is around snack time when Jason sometimes starts gagging uncontrollably. But yesterday I received a lovely message from his teacher to say "Hi Jill, Jason is doing well. Talkative and happy. He chose to have yogurt at snack time. Taking it very slow and he is telling us if he wants more or just water. Drinking lots too :-)". So all went well and I have just received my message to say "so far, so good" with a thumbs up. Makes me SO happy to get these messages knowing Jason is happy and enjoying his day and eating.
Tomorrow we have his IVIG (intravenous immune globulin) therapy in hospital for the day. Unfortunately it will be polygam as octagam is out of stock in the country. Polygam takes much longer than octagam so it will be a LONG day for us. Octagam is imported whereas polygam is extracted locally. A lot of people ask what octagam/polygam is. Well octagam or polygam is a solution of antibodies, pooled from donated blood donors. It is blood plasma. Because Jason doesn't have an immune system he requires this every 3 weeks in hospital. Jason receives 20 grams which is about 400 mls. It is given intravenously at a slow rate. This 400 mls solution saves him and builds up his immune system helping him fight off infections (bacterial and viral). Jason has combined primary immunodeficiency and without this treatment he would get sick all the time. Because he has combined primary immunodeficiency he is unable to fight off bacterial and viral infections. Jason's paed said the only alternative option would be a bone marrow transplant but we are not prepared to take that risk given Jason's condition.
It's just great to be getting back into a routine again. Feeding has started again and we are starting feeding therapy this week again - YAY. We have some catch up to do as we lost out on two weeks. Jason lost about 2 kgs because of the rotavirus but he is starting to gain again. My little man, he is just so amazing, he takes these knocks and just bounces back. He takes these hospital admissions in his stride, he goes through drip after drip and doesn't complain. Tomorrow we go again for the day. His poor little veins are so thin and we are battling to find decent veins these days. A port is not an option because of his immune system and that being another entry for infection. He still has the bruises at every entry point they tried and tomorrow we go again for another drip. We are just blessed that Jason is so good with these admissions and doesn't freak out. I think he understands that we are only trying to help him. This is all he has known, his whole life has been one hospital admission after the other and I guess to him this is "normal".
Tomorrow we will do another protein creatinine ratio urine test. In hospital we didn't even bother to test because every infection increases the levels but it's a good idea to test tomorrow.