Brody is much better now he is on the high meds. Still no temps all day. His leg is much better but he hasnt gone to the toilet in 6 days, they have given him something, so hopefully soon he will go. Also still on the oxygen while he is sleeping and he is sleeping alot.
Bill was here today with us, he watched Brody sleep while i got a jail free card to go tell my dying pop that i love him. I am so glad i went as all he every asks about to everyone is how's Brody.
They say bad things happens in 3's, well two things happen to me today, 1st i fell over at the front entrance of the hospital and 2nd thing was that i got stuck in the hospital lift and had to call for help. I am scared about what is going to happen next? as the day is not over yet!
My friends from Lane Cove (Jo,Jo and Chris) came to visit today, while Brody slept through us laughing, we had a good time catching up. It was good to talk to friends as its hard to make friends here, not as good as it was making all my wonderful friendships at John Hunter Hospital.
I have started getting Brody out of the bed and taking him for little walks up the hall and back, as he gets tired really easy but needs some sort of physical activity, so he is not just sitting in the bed developing sores and becoming weaker and weaker. Thats about it for today, nothing much happens on weekends.
Saturday, February 6, 2010
Friday, February 5, 2010
Bone Scan- Day 10
No temperatures!!!!! Brody has had no temp all day and all night last night. We have to wait 48 hours with no more temps till they say we can go home. But we still might have to wait as Brody is still on oxgyen when he sleeps. His leg is getting better, as he could move it and walk around, with a limp, very slowly and while holding my hand. He has started to look better and be more himself.
Brody had to have a bone scan to see if the infection is in the bones. We walk down to the room where they gave him a liquid in his cords and then put him ontop of the machine. (As seen in pictures). Brody hated this, like Austium children he hates been touched and held down and wrapped up. Brody was ok at first but then screamed and yell as the man taped him up and held his head, so he would be still. It didnt really work, so the man said bring him back.
In a hour later i had to give him a med that would clam him and put him to sleep. As my friends found out, (Shelly and family and Vicki) this was a big effort for me to do. Brody would not take it and i had to hold him down and put it into his mouth. He can swallow tablets with no worries but will not swallow a liquid. The nurse and i then took him down again on the bed, he fell alseep and was so still for the scan. But his bladder was too full, they could'nt do the scan. We had to go back again when he had done more wee wee's......
Two hours later we took him down again, on the way down Brody played us a song with his gutair while singing save a horse ride a cow boy. We got to the room and he had to be taped up again. He was wiggling around trying to get free. It is hard to watch your child go through this as you know they dont like been tied up and wrapped up. But you have to learn how to be cruel to be kind in this situation as they have to run these tests to help him. I just hate begining the bad guy all the time. The scan was then completed, Yeah!!!! and we went back to his room. All the effort made him tired and he went to sleep.
We have no more results and still dont really know what is happening. My wonderful man and Brody's step dad (Bill) come and gave Brody a pet fish for his room. Brody called it Jo, Jo after the mean man on the powder puff girls.
Thursday, February 4, 2010
Stem Cell Collection!
Brody had a huge sleep in this morning, he woke up moving his leg a little bit and was a tiny bit happier. Then it was all go, go, as they took him to a ultra sound for his hip and then we went of to collect his stem cells.
We found out that the hip, ultra sound was normal. The stem cell went well and they collected 2.4 stem cells, which they were really happy with. So we dont have to do it again tommorrow. Yeapy!!!!!
You can see from the photos the machine that collects and divides the blood & cells. But its not as easy as it looks, it can cause problems and Brody had to sit on the bed, still for over 4 hours and have his neck turned the right way. This was horrible, lucky for me, my mum came to help me keep Brody entertained. At first they were going to pull the plug but i got him to have a half hour sleep, which made it that little bit easier. We watched Tv and played with his DS, and also played with his Ben 10 men. We still had a few issues of him saying NO WAY, GO AWAWY, and hiting, but other wise they got what they wanted and i am happy with that.
Brody has till got a temp so not going home any time soon and you can see by the photo's he still has to have oxgyen. Tommorrow he will have a bone scan to see if the infection is in his bones, as they still are puzzled.
Wednesday, February 3, 2010
The 8th Day in Hospital!
Brody's temperature today peaked at 40.4. He is still very tired, not eating or drinking much, he has a very sore tummy and leg. He has not moved his leg all day, a Doc come and had a look but of course will talk with the team and then maybe do something about it tomorrow.
He is not happy at all and wants to go back home to Nabaic. He has not moved of the bed or off his back all day and he has slept most of the time. Still have no results for his chest, but several different teams have come in and put their opinion in the pot. They believe its some sort of lung infection, but still wont know yet. I am getting very worried that after 8 days they still dont know what is causing this and worried about his leg. Hoping its not a blood clot. (cross my fingers).
It has been a horrible day in the jail house as the nurse on duty only saw us a few times and other nurses had to do her job, and other times we were left sitting with the machine buzzing in brody's ear for over half an hour. I cant wait for the change of guards, as some other nurses are just so wonderful and caring. Not a good senory issue for Brody when he is telling me to turn it off.
A bit of Good news today, as Brody's teacher from Great lakes and Manning Early intervention, rang me and told me that her brother and the NECA- National Contractors & Communication Association had a committe meeting and have donated $2000 to Brody's fund. So a big thank you to the local Forster, NSW, REXELL, HAYMANS & CETNAJ and NECA.
This will take off some of the pressures i am facing, as without a job, a single parent cant afford to pay all her bills and be with her child full time. So thanks again and to everyone that has helped us.
He is not happy at all and wants to go back home to Nabaic. He has not moved of the bed or off his back all day and he has slept most of the time. Still have no results for his chest, but several different teams have come in and put their opinion in the pot. They believe its some sort of lung infection, but still wont know yet. I am getting very worried that after 8 days they still dont know what is causing this and worried about his leg. Hoping its not a blood clot. (cross my fingers).
It has been a horrible day in the jail house as the nurse on duty only saw us a few times and other nurses had to do her job, and other times we were left sitting with the machine buzzing in brody's ear for over half an hour. I cant wait for the change of guards, as some other nurses are just so wonderful and caring. Not a good senory issue for Brody when he is telling me to turn it off.
A bit of Good news today, as Brody's teacher from Great lakes and Manning Early intervention, rang me and told me that her brother and the NECA- National Contractors & Communication Association had a committe meeting and have donated $2000 to Brody's fund. So a big thank you to the local Forster, NSW, REXELL, HAYMANS & CETNAJ and NECA.
This will take off some of the pressures i am facing, as without a job, a single parent cant afford to pay all her bills and be with her child full time. So thanks again and to everyone that has helped us.
Monday, February 1, 2010
Happy but sad day!
Today has been mixed emotions, Brody couldnt have the stem cell again, but went and had the CT scan. They also put a tube down into his lungs and put fluid in and then pulled the fluid back out. They want to see if he has something in his lungs causing this. He was under for over hour. Again i had to bite my tounge as a nurse from the CT department told Brody to be quiet and still for a moment while she was talking to another nurse. A big thank you to the other nurse, as she looks after Brody and told this nurse, he has Austium and cant sit still or be quiet as he is in a new area of the hospital. So you can see that Chantelle's story books have helped people understand Brody and not just think he is Naughty. There are more and more kids with Austium so please read up on it and do not judge anyone.
Some new Doc's come to visit today and said they are waiting for results from the fluid test in his lungs. They then might put a camera down and have a look, as the Doc said he had a quick look at CT scan and saw a mark on his lung. But wait a couple of days for results, as it could just be a fungal infection. Hope its nothing to bad. Couldnt handle any more bad news!
Good News!, Found out today as well, if Brody makes it through the time before his transplant his big brother Luke might be the person who donates. As they need to test Luke first to make sure he is physically fit, and healthy. If so they will use him. It might take us up to 8 months before transplant. I am so happy, but have tears too, that his big brother can, and will do this for his brother. I love him so much.
Brody is still not that good today, as he has still had high temps, sore legs, tired, hard to breathe and sick of it all. Therefore its been one of those roller coaster emotional days. I have the best two boys a mother could have and i LOVE them sooooooo much.
Some new Doc's come to visit today and said they are waiting for results from the fluid test in his lungs. They then might put a camera down and have a look, as the Doc said he had a quick look at CT scan and saw a mark on his lung. But wait a couple of days for results, as it could just be a fungal infection. Hope its nothing to bad. Couldnt handle any more bad news!
Good News!, Found out today as well, if Brody makes it through the time before his transplant his big brother Luke might be the person who donates. As they need to test Luke first to make sure he is physically fit, and healthy. If so they will use him. It might take us up to 8 months before transplant. I am so happy, but have tears too, that his big brother can, and will do this for his brother. I love him so much.
Brody is still not that good today, as he has still had high temps, sore legs, tired, hard to breathe and sick of it all. Therefore its been one of those roller coaster emotional days. I have the best two boys a mother could have and i LOVE them sooooooo much.
Hell of a Day!
Brody's day has been the worse day for an Autistic child, as he has had strangers coming in and out, and so many people touching him for tests.
To start with he had a nurse put the tube up his nose again, while i had to hold him down by sitting ontop of him. Then within 15 mins after it the blood lady come in to take finger prick to get some blood, but because he wasnt bleeding that had to do it 3 times. He has had this before with no problems but once he got frustrated with the nose, that was it, he did not want this either. By this time i got yell at, hit, told he hated me and scream right in my face. But thats ok, as i dont blame him, i would do the same thing. He then did tell me he loved me and gave me a cuddle. Thought that was all finished and finally got him settled, when two nurse come in and we all held him down and gave him a injection in the bum. Boy that was tuff! He did not like that at all.
Brody was starting to go to sleep and then broke out in welts again, Doc was called, Lack of communication happened and they gave Brody the one of his meds the wrong way, which then like before made a reaction. They fixed the problem so it wouldnt happen again. Lucky i was on the ball and worked it out and told the Doc. As he thought it was from the chemo injection, but he has never had a reaction to it. Should have been a nurse!
Brody temp has dropped with panadol, but goes up again later, still having oxgyen when sleeping and is going to have CT scan tommorrow. Levels were to low for stem cell collection.
After all that happen he had people that did not read his story or they dont understand him, and just come in expecting him to be like every normal kid and hold the part of the machine that goes on his finger (see picture) with no worries, SORRY not normal child, he wouldnt hold it even though he has, He just had enough, and she got a bit shirty with me, as i told her he had enough and not to worry about it, as it was not important at this time. She then ripped the thing out of his hand. I was getting ready to go off. I bit my tounge.
This is the type of things mothers and families have to go through all the time 24/7 with people who dont know anything about Austium or just cant be bothered to even read about it and know Whats the best thing for the child! Austium should not be ignored it too, is just important as having cancer. As you have to learn to live with this for your whole life and effects every day living. Family and friends need to learn more about it before they make a comment.
To start with he had a nurse put the tube up his nose again, while i had to hold him down by sitting ontop of him. Then within 15 mins after it the blood lady come in to take finger prick to get some blood, but because he wasnt bleeding that had to do it 3 times. He has had this before with no problems but once he got frustrated with the nose, that was it, he did not want this either. By this time i got yell at, hit, told he hated me and scream right in my face. But thats ok, as i dont blame him, i would do the same thing. He then did tell me he loved me and gave me a cuddle. Thought that was all finished and finally got him settled, when two nurse come in and we all held him down and gave him a injection in the bum. Boy that was tuff! He did not like that at all.
Brody was starting to go to sleep and then broke out in welts again, Doc was called, Lack of communication happened and they gave Brody the one of his meds the wrong way, which then like before made a reaction. They fixed the problem so it wouldnt happen again. Lucky i was on the ball and worked it out and told the Doc. As he thought it was from the chemo injection, but he has never had a reaction to it. Should have been a nurse!
Brody temp has dropped with panadol, but goes up again later, still having oxgyen when sleeping and is going to have CT scan tommorrow. Levels were to low for stem cell collection.
After all that happen he had people that did not read his story or they dont understand him, and just come in expecting him to be like every normal kid and hold the part of the machine that goes on his finger (see picture) with no worries, SORRY not normal child, he wouldnt hold it even though he has, He just had enough, and she got a bit shirty with me, as i told her he had enough and not to worry about it, as it was not important at this time. She then ripped the thing out of his hand. I was getting ready to go off. I bit my tounge.
This is the type of things mothers and families have to go through all the time 24/7 with people who dont know anything about Austium or just cant be bothered to even read about it and know Whats the best thing for the child! Austium should not be ignored it too, is just important as having cancer. As you have to learn to live with this for your whole life and effects every day living. Family and friends need to learn more about it before they make a comment.
Sunday, January 31, 2010
Brody the Vampire!
Scary stuff last nite as Brody peak at 40.2 and his breathing has still been low and needed oxygen. Doc's have said all results are normal, but X-ray has shown a little cloud on his chest. Its is nothing to worry about as he is now on more stronger meds. Doc will book a CT scan for his chest next week. Brody's bloods are to low for the Stem Cell collection, so they had to give him more blood, which did perk him up. As Ronald House at Newcastle would know how it does that to him. They are thinking about doing the stem cell tommorrow, thats if all his levels are ok.
Brody had a big cry today, as he wanted to go back to Nabaic with Bill, I think he is like me and just wants are normal life back with Bill, at Nabaic school, the animals and all our normal family activties. The nurses changed us to a new room, which is bigger and has more space to play when he gets a bit better. That cheered him up.
Other wise the day was pretty much the same as every day.
Brody had a big cry today, as he wanted to go back to Nabaic with Bill, I think he is like me and just wants are normal life back with Bill, at Nabaic school, the animals and all our normal family activties. The nurses changed us to a new room, which is bigger and has more space to play when he gets a bit better. That cheered him up.
Other wise the day was pretty much the same as every day.
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