HOME TO ADELAIDE

Brendan and myself arrived back in Adelaide on Monday afternoon. We are now in Adelaide's Women's and Children's Hospital. The plan is to continue Brendan on his antibiotics until the latest infection has gone from his body. Brendan and I are very, very pleased to be back in our home city. Brendan was very chatty and bossy during his re-admission to Brookman ward. I am hoping that being closer to home will make Brendan improve faster. He is desperate for some home leave and has a list of questions for his doctor. His first one being, when can I go home? I feel that Brendan is very close to being well enough to go home and become an outpatient. His eating has improved over the past few days and his nausea seems to have lessened over the last couple of days. He has a list of home cooked meals he wants me to make and talks a lot about the food he will be able to eat at home. The first dinner he wants is spaghetti and meat balls.

All we can hope for is a speedy recovery now that we are back in Adelaide.

Will keep everyone up to date

Love from Anna

DAY 96

Tara , Kieran and I returned to Adelaide last weekend as planned. We are happy to be back home. Anna and Brendan were going to follow us on the following Monday but unfortunately Brendan developed temperatures and positive blood cultures and so their departure has been delayed until Brendan is well enough to travel. The culprit was found to a 'line infection'.

Brendan had his central line removed on Saturday ( Day 95). It hasn't been replaced given how close to Day 100 we are -which is when it was scheduled to be taken out anyway. Although the source of the infection has been removed, Brendan is still having fevers ( as happened the last time his line was taken out). It is expected that he will bounce back over the next few days.

At this stage Brendan and Anna may be returning tomorrow ( Monday 30th June), depending on how Brendan's temperatures are overnight, or maybe later in the week. We will keep you posted.

In the meantime, I have returned to work and the kids are back at school. We are adjusting and looking forward to Brendan and Anna's return.

Richard

WERE GOING HOME

DAY 84

Richard, Tara and Kieran are flying home to Adelaide on Saturday. Brendan and myself will follow on Monday. We are all very excited to be going back to Adelaide. Brendan will go to Adelaide Children's Hospital when we land in Adelaide. His doctors will assess him and decide if he needs to be admitted or if he can go home and become an outpatient. Brendan's blood counts are looking very promising: he is needing very few transfusions and is starting to make his own platelets. This week we are focusing on getting Brendan to eat more and to try and get him to keep his weight stable. He has a very small margin to play with and will be placed back onto night milk feeds if he loses too much weight. Unfortunately, the night milk feeds make him feel sick.

For the next few days, we are slowly organising our mammoth amount of belongings that need to go back to Adelaide with us.

Will keep everyone posted
Love from Anna

DAY 82

Brendan has continued to improve. His stomach scope showed gastritis. Gastritis is an inflammation of the stomach lining. He is being given medication to reduce his stomach acid. Brendan is still struggling with nausea but this is beginning to improve since the doctors decided to stop Brendan’s overnight milk feeds. The plan is to get Brendan to eat more during the day so that he is not reliant on the naso-gastric milk feeds that seem to make him feel nauseated. Brendan still has low grade temperatures. The doctors have decided to not focus too much on the low grade fevers unless he is feeling unwell. The drug he is on to stop him from rejecting his marrow can cause fevers. He will begin to be weaned off the drug at around day 100.

Everyone is thinking that Brendan going back to Adelaide next Saturday is possible. We have to wait until Sydney has spoken to Adelaide as Brendan will need to be admitted to Adelaide hospital. He wants to visit home for a few hours before he is readmitted to Adelaide. Hopefully we can. This will give us the opportunity to unpack and re-pack again. We should know on Monday if Brendan can go home on Saturday.

Brendan is happy, chatty and even having the odd hissy fit. So far, we have seen no sign that his treatment has caused any damage to his brain. He has been having more visits from the ward to our Ronnie Mac unit during the day. He returns to the hospital at night to have extra IV fluids to protect his kidneys and his IV drugs.

Brendan has come a long way in the last two weeks. He would love to go home soon.

For now we will keep our fingers crossed and will let everyone know what our plans are.

Love Anna

DAY 77

Brendan has slowly continued to improve. He has had three day outings where he has left the ward for the day and visited us at Ronnie Mac house. He also visited a local ice cream shop for his favourite treat lemon gelato.

During the week Brendan will be taken to theatre to have a look at his stomach. Brendan has been suffering from nausea for the last two weeks. This is not uncommon in post transplant children. They will look for any swelling or abnormalities in his stomach. He could have Graft versus Host Disease in his gut. The only way to diagnose Brendan’s stomach problem is by looking at it with the scope and taking samples from his stomach lining. Brendan is very keen to have the procedure done as the nausea is really making him uncomfortable.

We are starting to talk to Brendan’s doctors about going home. Richard, Kieran and Tara are heading back to Adelaide on Saturday the 21st of June. A lot has still to be organised but Brendan and I hope to go home with everyone. Brendan will be transferred to Adelaide hospital until he is ready to go home and become an outpatient.

Tara, Kieran and Richard visited the Channel 7 studios in Epping today. We have a friend who works on Home and Away. Tara will be on TV in about 3 months as an extra on Home and Away. They had an exciting day.

Overall things are beginning to look up. If we leave Sydney on the Saturday, then we will be at Day 88. We are all getting itchy feet to get home.

Will keep you all informed
Love Anna

DAY 70

Wow day 70 ! Brendan is slowly getting better in his spirit. He is awake and chatting every day. He is enjoying playing again and is starting to talk about his future. His doctors have agreed that Brendan needs some time away from the ward. Once Richard is better (he now has the O'Loughlin cold) Brendan can start having visits to our unit at Ronnie Mac House. We move into our unit today.

Our new phone number at Ronnie Mac House is:

02 93822969.

It has been 24 hours since Brendan's last fever. We are all trying very hard not to get too excited. Brendan is very fragile. He is trying to get up and about and is taking quiet strolls around the ward. Any exertion wears him out very quickly. We are trying to get as much nourishment as possible into him. This is difficult as he is struggling with nausea. He really needs to have his naso-gastric feeds but they seem to cause him to wake up every morning feeling sick. By lunch time he usually has improved and is sitting next to me today eating some party pies.

Everything is still a fine balancing act but each day gives us all a little more hope that Brendan will be out of hospital soon.

Talk to you all soon

Love Anna xoxo