Wednesday, July 22, 2009
Back in the Good Books
Things can change quickly when you are being treated for leukaemia. Last week they took a turn for the worse. This week they did the opposite. One of the best things about my central line infection was that it made my new immune system really work. And it did. My WCC shot right up to over 11 when I was feeling really sick. Today I had a CT scan of my lung again. There's a slight little white patch still there, but my cough has now gone, so the white cells are really kicking into gear. My blood results are really good today. WCC is 5.2, Neutrophils are 3.2, Hb is 122, Platelets are 211. So I'm really like a normal kid, nearly, except I don't yet have enough B & T type Lymphocytes in that WCC. There the ones I need to protect me from infections. There the ones I need to be able to go to school, to go shopping, or go to the movies. They're currently on 0.2, but they need to be over 1.0. Best of all though, today I was given the news that my central line will come out the next time I'm in Sydney. That will be another general anaesthetic, but it will remove the possibility of picking up another infection there. Last week we discovered a way to go to the movies without putting me at risk. We go to the drive in at Blacktown. We think it's the last one left in Sydney. It's really cool, I get to sit in the front, and Mum and Dad sit in the back. Dad said that's how it was in his day anyway, and when I asked him could he see the movie, he said it didn't matter, he never really saw the movie when he went to the drive in anyway. Huh? I don't get it? Old people can be weird sometimes.
Monday, July 13, 2009
Back on Track...........again!!!
Well, after that little episode with the bacteria in the central line, I'm back on track again. A couple of days in hospital, and a daily visit to the hospital for some intravenous antibiotics for a week will have me back where I was, I think? I still don't seem to be able to keep these NG tubes in for long, but with a bit of luck, I wont need them for too much longer. I am gaining weight slowly, and the doctors have told me if I can get to 35kg, then they'll probably let me stop. I'm having this week back at RMHW so I can have the daily antibiotics, but should be home again at the end of the week. Never a dull moment in this business.
Thursday, July 9, 2009
Whoops! What a Bug.....er!
It doesn't pay to get too comfortable sometimes. This week was supposed to be like any other week. Come to Oncology Clinic at Westmead, have my blood tests, see the doctor, make sure everything is ok, go home. Uh uh!
Late last week, Dr Shaw had phoned up with the news that my "immuno globulin" level was too low, and when I came down next, I would have a transfusion of these to top me up. Simple!!! I've been on fortnightly visits because the only reason I need to come to clinic weekly was to have my central line flushed, which Mum can do anyway. Fortnightly blood tests and therefore visits, were sufficient.
This week, we came down the night before, same as usual, and on Wednesday morning, Dad took me up to fishbowl to have my bloods done, and one of my lumens hep locked. (The central line has two lumens, one white and one red, and after blood is taken, these are flushed with saline, and filled with heprin so that blood doesn't clot inside them. This is called hep locked for short). The other lumen was left alone, because the nurses in clinic would use that one to do the tranfusion of immuno globulin. After the visit to fishbowl, we went back to Ronald McDonald House and had brekkie, then Dad went off to his wool sale. Same as usual.
After brekkie, Mum took Georgia up to the hospital school, and then she took me to clinic for my usual meeting with Dr Shaw. All my blood results were good, and apart from a nagging chesty cough, most likely due to me now having white cells to mop up any residual infection, all was well. So, let's do the infusion, then we'll head home to Forbes.
After about thirty minutes, I was starting to feel really sick. Debbie, the nurse decided we should take me to a private room so they could monitor me. I think she suspected something was wrong. After about an hour, I was in real trouble. My blood pressure had plummeted, my temperature was about 39.6 and I had the rigors (shakes) really bad. I was being sick, couldn't drink enough to satisfy my thirst, and on a down hill spiral. Debbie decided it was time to take some action. Back came Dr Ruchira who agreed, get the fluids going and let's start the antibiotics. About half way through the third bag of fluid, Dr Shaw came in and said if my blood pressure didn't stabilise after the third bag, I would be going to ICU. Intensive Care Unit. Never been there before, but I was too sick to care. I'm pretty sure Mum and Dad (who had arrived back just as I was starting to feel off) were really, really worried. Anyway, after the third bag of fluid, and the first of the antibiotics, my blood pressure did stabilize, and I started to feel a little better. I even felt well enough to eat an icy pole. It was a big relief, especially to Mum and Dad, when the doctors said I was going up to Camperdown, and not to ICU.
On Thursday morning, the nurses took my bloods again, and I was on three of the antibiotics I'd been on after transplant. Gentimyocin, Timentin and Teicoplanin. At lunch time, I was told that the lab had managed to culture a "bug" in my line, and that I would have to stay in hospital for at least a week. Oh well, best place to be I suppose.
I was really starting to go well too. My appetite is slowly coming back. I've got more energy, and can run around in the yard. Just to make sure we don't get too relaxed, I get a bug in my line. They are now thinking of taking my central line out to reduce that risk.
These "bugs" in a central line are not uncommon for kids like me, but if you get one, things get pretty scary. Oh well, I think I'm on the mend, again.
Late last week, Dr Shaw had phoned up with the news that my "immuno globulin" level was too low, and when I came down next, I would have a transfusion of these to top me up. Simple!!! I've been on fortnightly visits because the only reason I need to come to clinic weekly was to have my central line flushed, which Mum can do anyway. Fortnightly blood tests and therefore visits, were sufficient.
This week, we came down the night before, same as usual, and on Wednesday morning, Dad took me up to fishbowl to have my bloods done, and one of my lumens hep locked. (The central line has two lumens, one white and one red, and after blood is taken, these are flushed with saline, and filled with heprin so that blood doesn't clot inside them. This is called hep locked for short). The other lumen was left alone, because the nurses in clinic would use that one to do the tranfusion of immuno globulin. After the visit to fishbowl, we went back to Ronald McDonald House and had brekkie, then Dad went off to his wool sale. Same as usual.
After brekkie, Mum took Georgia up to the hospital school, and then she took me to clinic for my usual meeting with Dr Shaw. All my blood results were good, and apart from a nagging chesty cough, most likely due to me now having white cells to mop up any residual infection, all was well. So, let's do the infusion, then we'll head home to Forbes.
After about thirty minutes, I was starting to feel really sick. Debbie, the nurse decided we should take me to a private room so they could monitor me. I think she suspected something was wrong. After about an hour, I was in real trouble. My blood pressure had plummeted, my temperature was about 39.6 and I had the rigors (shakes) really bad. I was being sick, couldn't drink enough to satisfy my thirst, and on a down hill spiral. Debbie decided it was time to take some action. Back came Dr Ruchira who agreed, get the fluids going and let's start the antibiotics. About half way through the third bag of fluid, Dr Shaw came in and said if my blood pressure didn't stabilise after the third bag, I would be going to ICU. Intensive Care Unit. Never been there before, but I was too sick to care. I'm pretty sure Mum and Dad (who had arrived back just as I was starting to feel off) were really, really worried. Anyway, after the third bag of fluid, and the first of the antibiotics, my blood pressure did stabilize, and I started to feel a little better. I even felt well enough to eat an icy pole. It was a big relief, especially to Mum and Dad, when the doctors said I was going up to Camperdown, and not to ICU.
On Thursday morning, the nurses took my bloods again, and I was on three of the antibiotics I'd been on after transplant. Gentimyocin, Timentin and Teicoplanin. At lunch time, I was told that the lab had managed to culture a "bug" in my line, and that I would have to stay in hospital for at least a week. Oh well, best place to be I suppose.
I was really starting to go well too. My appetite is slowly coming back. I've got more energy, and can run around in the yard. Just to make sure we don't get too relaxed, I get a bug in my line. They are now thinking of taking my central line out to reduce that risk.
These "bugs" in a central line are not uncommon for kids like me, but if you get one, things get pretty scary. Oh well, I think I'm on the mend, again.
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