DAY 25
A ROLLERCOASTER RIDE

Over the past few days Brendan has been feeling a lot better. His white cell count has been up and he is beginning to show signs of a neutrophil count. He has started to drink juice and has had a handful of chips on a few occasions. He is spending more time awake and is interacting with everyone around him, even arguing with Kieran. Small activities still wear him out. Bathing and daily care is a major exhaustion for him.

While everything was looking up, last night Brendan began to become unwell again. The difference between yesterday and today are startling. He has developed a fever, a pain in his side caused by a swollen spleen and is sleeping as he feels so unwell. Today will be a day where he is constantly disrupted by tests to try and find out what is wrong. Brendan, as always, is a great patient. He rarely complains, never whines and when he does we sit up and take notice.

Transplant is always described as a rollercoaster ride. You can be excited at blood results in the morning and worried sick by the evening. The whole process is really taking one day at a time and sometimes you need to break the day into small pieces as there can be so many things that can be worrying in one day. One day can bring a multitude of emotions. Just when you find yourself feeling safe and smug something comes along and smacks you in the face. So many things can go wrong that are caused by his own body or by the stress we are putting on his body.
I am sitting next to Brendan watching his nurse doing his line change. He has so many lines that they become impossibly tangled in a very short period of time. The whole process can take over an hour and needs to be done every three days. His entire lines together look like one stringy puzzle maze.

Hopefully, next week Brendan can have his central line replaced. The trick will be to ensure he is well enough to cope with a general anaesthetic. If his pic line is causing the trouble, then it will need to be removed before his central line has been replaced. This then makes us all wonder how he will get all the drugs he needs.

Brendan loves having Kieran and Tara here. Tara has returned to Adelaide as her school choir is going on a tour of Alice Springs. She will be back to start school in about a week and a half. Kieran is with us and even when Brendan is unwell, he likes watching Kieran play on the computer and chats to him. He really enjoys having some kid company. The kids have been enjoying Sydney. This is the first time that they have spent any length of time here. We have been taking turns with them visiting the sights of Sydney. We are all getting into the rhythm of living at the hospital and caring for Brendan and each other. I hope that my next blog will tell you all that Brendan is feeling better.

Cheers to next time
Love Anna and family.