DAY 14

The last few days have been very difficult. Brendan has continued to have high fevers, rigors (uncontrollable shivers) and has been feeling unwell. The doctors have tried every possible antibiotic to try and stop the possible infection. Every test (culture) they have run comes back negative (so far). Sometimes children have fevers during transplant that cannot be explained. The other difficulty is that as Brendan has an extremely low white cell count and no neutrophil count he does not have the swelling and pus he would normally get with a bad infection.

On Monday morning, it was decided to take out Brendan’s central line from his chest as the skin surrounding the line was red and swollen and very painful. The line may be the source of his infection. The central line is the line that all Brendan’s bloods, medicines and nutrition are administered through. This meant that he had to have a general anesthetic. He now has a pic line. A pic line is a line which runs internally along a vein from the inside of his elbow to his heart. They also placed in two other general lines into his veins to help with the amount of drugs and supportive care Brendan requires. Unfortunately, the pic line was not in the right place when it was inserted, so Brendan had to have another general so it could be replaced. By the end of the day Brendan was a fevering miserable mess. He was now hours behind in his medicines and blood products. Richard spent the night listening to Brendan’s ‘spaceship’ beeping. Brendan now has 9 pumps running almost continually with medication, blood products and nutrition. Out of a 24 hour day there is about two, two hour windows when his pumps are not beeping intermittently.

Brendan spends most of his days resting. He spends very short periods of time watching TV or playing computer games. He is still struggling with diahorrea and is swollen from excess fluids. He pulled the last of his beautiful eyelashes out himself today. The one thing he enjoyed (his daily shower) has been taken away for a while. His lines are wrapped in bandages which can’t get wet. His shower was a place where he had some privacy and some space away from other people.

Richard and I are feeling the effects of missing so much sleep. When you sleep in Brendan’s room the ‘spaceship’ sounds off a sporadically beeping alarm which gets louder if it is not seen to within a certain time. Our room is almost sound-proof so the nurses can’t hear the beeping. Every second night we get a good nights sleep but even that is not enough anymore. Our accommodation at Ronnie Mac house has made a difference. Our room is quiet, safe and comfortable. The house is always full of families with amazing stories. For now, we are taking what each day throws at us. Brendan is overall a week ahead where he was expected to be at this stage in his white cell count. If we can find out what is causing his infection and control his fevers he will be a much happier little boy.

Lots of hugs to everyone
Love Anna