Up until last night we have spent the passed 4 days preparing to be discharged in time for the Anzac Day march on Thursday. It was really just a matter of getting him off the continuous feeds that we’re being regulated by a pump and back onto regular feeds.
Initially I was a little daunted by the concept of his return home not only due to the increased work load for me but also knowing that we need to be alert and ready to return back to the hospital at any time. This means that both Tom and Isabel need a Plan B of where they can go 24hrs, 7 days. We had the systems in place and with the amazing help from family and friends it was all working and ticking along. Needless to say I’m working on some new plans and schedules for when the little guy does return home and not feeling so overwhelmed by his return. However, at this stage it’s not looking like anytime soon.
Edward’s spirits have been high, he was happy and enjoying his day passes home and visits to friends and grandparents. Yesterday Ed and I even managed a few hours at The Australian Reptile Park where Isabel and Pete were enjoying the day which was organised by Camp Quality.
We’re just waiting at the moment to go down to theatre to have a CT scan and bronchoscope (camera inserted to examine lungs) to see what is causing these breathing problems. The x- rays revealed some minor changes from his previous ones suggesting there may be some fungus caused by a virus on his lungs. They need to know what sort of fungus, if any is causing these problems so that they can treat it with the correct antibiotics. Due to the chemotherapy his blood counts are still low and continuing to fall so the poor little guy is pretty flat, tired, sick and lethargic– struck down once again.
Depending on how he goes after the General anaesthetic and given the amount of oxygen he is requiring there is a possibility he will be moved to ICU so that he may receive one on one care if required. I’m hoping this doesn’t happen as it’ll mean we’ll lose our reservation in Suite 7 and will need to pack his toys and pull all of this down.