7th of August

We didn't go home as planned and are still in hospital. We are all working hard to get Brendan well enough to go home on the weekend. Brendan's diarrhea is not caused by Graft versus Host but by a nasty gastro bug called Rotavirus. On the Monday we were due to go home, Brendan looked worse, was losing what tiny amount of precious weight he had and was feeling too unwell to want to go home. The doctors put Brendan on complete gut rest and started him on TPN (Total Parenteral Nutrition). All his fats and vitamins and minerals are given to him through his vein. Thank goodness we put the Pic line in. Within 24 hours of TPN Brendan started to look better and 2 days later we are talking about getting him back on overnight milk feeds and home on the weekend.

We have been able to stop Brendan's anti rejection drugs as there is no sign of Graft Versus Host. It is great to be able to stop the drugs but he still remains on a lot of prophylactic drugs as he will remain immunosuppressed for another 6 to 12 months. We are making plans to take a birthday cake to Brendan's class next week. It has been a long time since he has seen his friends. Brendan's name has been called on the class roll everyday this year and everyday his little friends reply "Brendan's not here today". Brendan wants Mum to make a number 7 cake to share with his class mates and a castle cake with a dragon as his special cake to have with his family. All we need to do is get home so we can get busy baking. Hopefully our next bit of news will be that we are back home and outpatients at the hospital again.

Will put some photos up of Brendan's when he is 7.

Love to everyone.

Anna

ONE HOUR LATER

Went out for a walk while Brendan was having a nap. Found out when I returned that Brendan does not have Rotavirus as it was a 'false positive'. This at least means that we are out of isolation. Unfortunately we cancelled his small intestine biopsy due to the Rotavirus, so now we are back to not knowing what he has and is still causing the horrible diarrhea. We seem to be having one of those weeks where everything is a little upside down. Our concern is that Brendan's treatment has caused damage to his intestines. The roller coaster ride continues.

Love Anna