Happy Birthday!!!

Today started with Brody wanting chicken soup and saying he is hungry all day. AS his biopsy was in the afternoon, so it was very stressful, trying to help him forget about food. Its a bit unfair for children, as Brody is on steroids which make him hungry, but he cant eat until nite time.

All went well, results will be in a few days, he's nose tube come out, but i am so glad that he was still asleep, when they put it back in. Other wise we would of had problems. So nose tube back in and feeds going through it again. Still on TPN, but might come off it in a couple of days. Best part now he is on the steroids the rash is clear up and no more runny poo's. Hopefully the GVHD got enough time to kill of some cancer cells.

Today was a my Birthday and the lovely nurses of Variety made me a wonderful cake and sang Happy Birthday to me. I got some lovely presents from a wonderful mother and friend in the ward. Grandma and Grandpa also brought us a Birthday cake. Sooo we had lots of cake today.

Two Birthdays in a row in hospital, whats going to happen next year???????

Thank you to all my Friends and family for all your wishes for my birthday. Thanks LOve you all. xoxoxoxoxo

October long weekend!!

As you all know not much happens over the weekend, and long weekends are worse.
Brody has been eating Grandma's chicken soup, for breakfast, lunch and dinner. That's all he wants.

He is doing really well at the moment, as the put him back on the steroids, so he is cheeky, active and a bit emotional. He still gets very tired by the afternoons and goes to bed early. Wish i could do the same.

Tomorrow is our big day, when he has his bowel biopsy and a camera done the throat. We wont know results for a couple of days.

Pet scan result

Brody has been very perky this morning and then the doctor's told us we could have a gate pass this afternoon, so then he has been on a emotional roller coaster as he hates waiting. But we had to wait to slowly take off the TPN.

The doctor's have told us that the results from the PET scan showed two spots in the bowel that are red, but they are not 100% sure, so they are going to do a bowel biopsy on Tuesday. Happy Birthday to me!!

So we are still playing the waiting game, but they are going to start on steroids again for his rash on the skin, but waiting for results to see what medications to use for the gut and bowel.

So will be in here for a while longer until its all worked out and he is alright to go home. I am so glad that i have the best nurses that keep me going and on my toes and wonderful friends that i have made here.

Also i am so lucky to have all my friends and family for their support as you all have thought of me. LOve you all xoxo

PET Scan

This morning we had to starve ourselves so we would be ready for the PET scan. Brody had to get off the TPN very slowly and just be on fluids.

He was a bit grumpy all morning, and had a obsession with cutting out things with paper, which for the first time he made rectangle shapes and a square and made a robot. We did this once before with a stencil, the shapes were already marked on the paper. He is so amazing to remember what shapes he needed and to cut it out with no marks on the paper. Cant believe it!!

We left for the PET scan at 12.35pm and the porter pushed Brody's bed over to the adult hospital, as they don't have a PET scan machine in the kids hospital. The porter dropped us off at the wrong spot, so the nurse and i had to push the bed to the right place. The poor nurse will be black and blue tonight as the bed kept pushing her into the wall. Need L's to drive a bed!!!

Brody and i stay in a little room where they put some special dye into him, i had to stand and sit behind a metal shield, as the dye had radiation in it, and could come off Brody to me.

We had to wait 45 minutes for the dye to go through and then they put him to sleep.

I then had to carry him into the room with the machine, where they tapped him up, so he cant fall off or move. The scan took about half hour. Brody had a good sleep, until 5 pm.

This afternoon he woke up very perky and ate some of grandma's chicken soup with toast. Maybe he should of had the scan earlier, to get him to eat. LOL

Hopefully we get the results tomorrow.

Not much news today as Brody is still the same. He did have his 9 hour treatment for the poo bug again. Cant wait for that to finish.

Doctors said sorry for gate pass issue yesterday and told me they forgot he was still on the potassium and TPN. They will now include the potassium with the TPN and run the TPN for 20 hours so that way he will get 4 hours without the cords, so he can get some exercise.

PET scan tomorrow, so big day.

Brody and i worked on his cutting, painting, drawing, and played playdough today. Before this i couldn't even get him to cut a piece of paper and now he wants to cut. Think he knows he can do these things as he cant do active things. One good thing is that it has taught him to do different school stuff and with all my work and ABI i think he will be ready to start school in a support unit next year.

Brody's GVHD is coming back like a steam train. He is very itchy and is having cold shivers. This is a good thing but we don't wont it to get to bad.
Doctors said today that they will do the PET scan Thursday and see what is going on, then they might put him on a new tablet that helps with the GVHD. But all this work does not change his very high risk of the cancer coming back.

The silly doctor's also told the nurse we could go on a gate pass today. I had to laugh as the nurse told me, as i said to her, what about his TPN and Potassium? As you cant just stop these, you have to slowly come off them. The nurse said yes that's right, she went and doubled checked with the doctors and come back saying No gate pass! LOL I should be a doctor now. But worse part is, it doesn't give you much trust in your doctors when they forget that they were the ones that put him on the TPN and Potassium. But everyone forgets and makes mistakes, as i think they were thinking because they have stopped the anti biotic he could go out today.

Not much else happening, is all a big waiting game and cant plan anything. You all should look at your lives and be grateful for all the little and big things, as i am very grateful for everything as this experience has taught me so much about life.

As you all know and i have said before weekends are really quite and boring, so i have a rest from writing the blog on those days. Unless something happens, then i will write something.

Over the weekend Brody has had the steroids which has perked him up a bit, and becoming his cheeky self. Autism children don't know social behaviours like normal children and when and not to do things. Brody gave a perfect example of this as he went for a squeeze of a nurse's boob. It was really funny and kind of cute, but the nurse and i knew we couldn't laugh and had to have our cranky faces on so he would learn he can not do that to people. I can understand if its a little child, as i used to get that at day care, but not when they are five.

Brody is still on the TPN, and nose feeds as he still isn't eating. Because of the steroids he wants the food but when he gets it he cant eat it. Today he had 12 little chicken in a biscuits, a least it a start.

He is still having low levels of potassium, which is normal. The doctors booked his PET scan for tomorrow, but due to the virgin blue flight cancellations, he cant have it till Thursday, as something has to come from Melbourne for the PET scan and wont be here till Thursday now.

Brody is still doing runny poo's and going through heaps of nappies and wipes. He also has a sore red bottom that needs lots of cream.

We also moved rooms today, back into the nice big room, we had for transplant. The lovely nurses in Variety loves as both, they organised the room for us. Which will make life a bit more easier, as i think we will be here for a while. Brody needs to be on full feeds, no TPN, no temps and alright to go before we get home. So will be a while.

The steroids have been stopped today, so the next couple of days we will see the GVHD coming back. Hopefully it will work its magic. We wont know till a months time, when they do the next bone marrow test how good it went.