Lung Biopsy!!!

Every thing went really well with the lung Biopsy today, the nurses in recovery said that he might be in a bit of pain and that the doctors can give him a strong pain relief or panadol. But Brody didn't even know what happen until several hours later, when he noticed the bandaide on his chest and the ink marks where the doctors drew lines. Therefore his pain threshold is still quite strong.

They have given us the ok to go home tomorrow morning, so we are busy packing all our stuff up again tonight. Yeah!!! Cant wait for a nice bed, home cooking and the rest.

We had a nice visit from a old school friend that i haven't seen in 20 years. It was a great visit, thanks Kylie. xoxoxo

Yeah!!! Might Go home this weekend.

Very busy couple of days, with Blood and platelet transfusions, meetings, tests and people coming in and out. Some days it feels like a circus, with so many different hospital people coming. There is no privacy or much time to just be by yourself. So when we get go home we just cant wait to be left alone by everyone. The funny thing is, even though you have all these people coming in, you still feel alone, and i think its because Brody and i are going through this battle alone, its not their battle.

Brody had a bone scan yesterday and today he had to have a finger prick blood test, which he wanted me to go first to see how brave i was. LOL. It didn't help, i had to hold him down. He has had this before and went really well, but i think he feels alot more now that his body has gone through so much, its become sensitive.

I had a meeting about LUke with Transplant team, but didn't find out anything except Brody's transplant will now be early July. 3 weeks before transplant we will be in isolation which means no visitors for this time and the time during transplant and 4 weeks after transplant. So it will be a very hard time for both of us.

Brody has his lung test tomorrow and if he is well enough after it, they are letting us home and Brody will go on tablets for his infection, instead of the drip. Its great news as we have been here for two weeks now, and need to have time at home before transplant starts. We will still be in for more test and check ups, but a least we can be home and do this we want. Brody aslo has a hearing test tomorrow, so another busy day, really warn out this week, its been the busiest week of them all.

Sorry the video is on the side. xoxoxox

Busy week.

So far its been a very busy and tiring week, some days its hard to even think or walk around, but i just think of Brody and what he is going through and push myself on.

Monday we had the lovely Chris from ABI come out and then we tried to have a sleep, but this time i left my phone on as i was waiting for an important phone call and everyone rang, its always the way, couldn't believe it there was about 5 calls. So no sleep for me, which was hard as the nurse we had for the nights kept waking me up as she would close the door in a loud manner, or didn't fix the machine right, so it would go off all the time. So most nights i finally fell asleep after 1.00am. So i needed that sleep on Monday. Oh well!!

Monday night i slept like a rock, as we had a different nurse and every thing ran perfect!!! Yeah, but still tired.

Today again we had Chris from Abi do his stuff with Brody, as i am so proud of him, he is wearing the nose tube for 5mins now. This is small steps but he is getting so close.
We had the school teacher pop in for 5mins and the music lady Bonnie. We also had the doctors pop in.

The latest news is that Brody's infection is a fungal infection in his lungs, on Friday he will be having a lung biopsy to determine what type of fungal it is, so they can treat with the right meds. This will also delay Transplant, so we are now looking at July. Hopefully once they get him on the right meds we will be able to go home(Grandma's) for a little while before they start him for preparation of the transplant.

Brody today had a back x-ray for one of his tests he needs to do before transplant, he will also have a bone test tomorrow and a hearing test on Friday as well. He also needs a platelet transfusion tomorrow. So far its been running backwards and forwards to different rooms in the hospital. Some days i wish they will leave us alone to rest or just do nothing.

I also have a meeting with transplant doctors for LUke and a meeting with play therapist on Thursday and also the leukaemia foundation is coming for a meeting. Hopefully i will get some rest in between all these things.

My lovely mum and dad have also popped in and brought a lovely chicken soup and bread rolls for us for dinner to warm us up. It was nice to have some of Grandma's home cooking. Thanks mum and dad. xoxooxox

Surprise!!!

Today Brody and I were ready to do some craft and sit around watching CD's. But our lovely nurse come in and said Surprise you can have another Gate pass, for a couple of hours. I was sad but happy at the same time, as Grandma and Grandpa had already taking Luke to the airport so we missed out on seeing him off, also i would have really loved to see my friends play in their band (The Rough Diamonds) but i only had a couple of hours, so we went back to Grandma's and watched Tv and had one of Brody's favourite meals BBQ chicken on bun rolls. Yum!!! Then we went back to the jail house and had a big sleep.

Brody's temps have stopped. Yeh!!! but still is very tired, runny nose and cough. He also gets out of breathe really quickly. So slows him down a bit but he keeps pushing himself to go on. I don't know how he does it, because if it was me, i would be sleeping all day.

I have superhero posters all around his room, to give him encouragement to keep fighting as he loves superheros and he is my little superhero.

Next week, he has more tests to do and i have some meetings for Luke and Brody with doctors and play therapists. Hoping to find out some information and what will be happening as i need to prepare Brody, so he want fight the doctors and nurses. ABI and I have started to get him use to the feeding tube on his face and oxygen tube but we still have a long way to go and i need to know other things he might need to get use to before it happens.

Luke will be back in a couple of weeks to do more tests, but will only be down for a day or two. He is doing a wonderful job and i am very proud of him. Love you mate xoxox

Gate Pass!!!

Brody and i got a couple hours gate pass from the hospital today, so we could spend some time with Luke before he left tomorrow to go back to Queensland. Its funny how Brody acts different in certain environments, as Brody has not cuddled Luke at the hospital but as soon as we got to Grandma's he raced up to Luke and gave him a big cuddle.

We had a nice time, but the couple of hours just went to quick. Grandma and Grandpa cook a beautiful bake dinner for us which Brody had two serves. Luke and Brody played some play station and watched some TV.

We got back to the hospital and Brody fell fast asleep. The nurse gave him his platelet transfusion and did all the routine checks. He hasn't yet got a high temp, so cross your fingers its starting to go. He still has his running nose and cough and gets very tired.

Tomorrow Brody and I have a day full of craft activities to do, which will be lots of fun as the play therapist gave us lots of didn't craft stuff to do.

Still don't know much but i know that if Brody doesn't get over this soon, we will be in here till transplant with no break and they might even postpone transplant for a while. So not to happy about that as wanting Brody to have some sort of normal life before we are in isolation, with no visitors and no normal day to day activities.

Not so good news today!!!!

After waiting all day with no food or drink, Brody had his CT scan at 3.30pm. It was a hard time trying to keep his mind off food. As all he wanted was his favourite pizza and Garlic bread.

We also had so many doctors and nurses, teachers and play therapists coming in organizing appointments with me and doing their normal checks, which this made Brody climb the walls.

No news from the EEG, maybe next week. Brody's bloods were low, so is now having a blood transfusion.

After the CT scan, we got back to our room, where Grandma, Grandpa and Luke were waiting with pizza and Garlic bread, Yummy, Yummy.... Brody was so happy.

Our main doctor that we are under and only met once come in with another doctor. I got told that we will only see our main doctor if there is something wrong. So you could imagine what was going through my head seeing her in our room.

The Bad news is that Brody has some type of Pneumonia. They have started him on new meds and will do another CT scan next week, if meds don't work he will have to have a needle into his lung to get some of the bug out so they can tell if its Fungal or bacteria. Its so not fair that we have to now fight this and it might delay the transplant. I have been so careful with him but like others i have seen, they can catch it from the hospital. So from now till after the transplant i am going to be more careful for Brody's sake. I am glad i got my flue shot as then i know i dint cause this. I am very upset at the moment as we have to battle yet another thing but i know Brody is such a super hero and will fight all the way.

Very tired!!!

5.30am the alarm is ringing in my ear and i didn't want to get up but i knew i had to get Brody awake so then he would be able to go to sleep at 11.00am for EEG. I got out and got Brody up watching Tv and got his breakfast for him. I then did Brody's activities with him to tire him out mentally as well.

The nurses come around to give him something little to help him sleep, which he hated and hurt his mouth sores. But every thing was well worth it as I got Brody to sleep very quickly (First time ever). He had his EEG and then come back to the room and slept for over 2 hours. I also tried to have a sleep, but during the day it is alot harder as there is more noises. Should fine out something from the EEG tomorrow, which will be interesting if his seizure disorder has turn to epilepsy as they have told me in the past that it would.

Brody's temps are not coming so much but still peaks high once a day. His nose runs like a tap and still has his cough. They are going to to yet another CT scan of his chest, head and tummy tomorrow. He will be but under completely for that one.

I have been very emotional lately as i am finding every thing getting just to hard. Its alot of work to look after a child with Autism in hospital 24/7 and then have wonder and stress how i am going to answer the next debt collector on the phone. I have so much going on in my head that i cant let out and i have to just keep pulling a fake smile, it is sending me crazy. Also worrying about what will happen and just not knowing what is going on, as they never tell you much and then they change their minds all the time. It is so frustrating.............. Grrrrrr.........