I am writing this post feeling quite sad today. As you know Seth has been doing incredibly well and I really have nothing to complain about. He continued to do so well the doctors were going to send him home on Wednesday. Unfortunately when Wednesday came, Seth's kidneys were no longer coping with the amounts of drugs he is on. We had to flood him with fluid as they didnt want to put him back onto a drip. In a perfect world, they wanted him to have 2 litres in 12 hours. A feat that is impossible so soon out of transplant. He vomited a couple times and we ended up flushing gastrolyte through his ng tube to spare him the ordeal of constantly drinking. Needless to say, he didnt make 2 litres, but he managed to get through 1 litre. They stopped some of the drugs that effect the kidneys and his creatnin levels started dropping. On Friday we were allowed home on the condition we kept up with the water loading. We were given so many rules and regulations about what he can and cant do and eat. The main ones are no crowds, absolutely no takeaway, no visitors who are sick, he can only drink from a water bottle for two hours before it has to be thrown away, only long life juice not fresh and he is not to have it after it has been opened for 24 hours, preferably no leftovers, no deli meats or anything that comes from a deli, no cut fruit from supermarket, no bread from a bakery and it continues on and on. He has so much medicine to take, its crazy, half of our table is covered in medical supplies just to keep up with his requirements. We could open Masons Medical Centre with what we have.
We arrived home around 3pm and Seth was beside himself with happiness. He got his mojo back and all was right in our world. It was Sienna's birthday and we were so happy to be home to celebrate with her and give her some pressies we had been storing up. We had homemade pizza which was both what Seth and Sienna wanted for dinner and Seth ate most of one slice. There were even fireworks down in Picton that we had a perfect view of through our back window. Sienna claimed them for her birthday and seth claimed them for his homeoming. It was the perfect end to a very momentus day for us. We were one step closer to beating cancer and moving on with our lives.
I woke a few times through the night because his feed pump kept alarming. When I got up at 5:30 to fix it, Seth felt really warm. I didnt want to believe it, so I got the thermometer and sure enough 38.3. Seth didnt believe me so we tested with two thermometers about 8 times till it sunk in that he was going back to the hospital. Seth was inconsolable, he just sobbed and sobbed. It broke my heart to see him like that. We gave him some panadol and his sisters got up to say goodbye and that was that. Seth spent most of the day in emergency today, waiting for a bed. He finally went up around 3:30 this afternoon. His temp is on the rise again, we have no results from all the tests done this morning but hopefully it wont be anything serious and he will be home sometime this coming week. I will keep you posted on the outcome.
Seth
Saturday, September 29, 2012
Tuesday, September 18, 2012
Better than we could have imagined
Seth is doing extremely well. So well in fact that he has been having gate passes from hospital for a couple hours. This has done amazing things for him. He has more energy, he is happier, he is putting on weight and is doing so much better than we ever could have hoped for. He is still going out in a wheelchair as he is still weak. He had a wonderful time on the swings the other day and we had to ask him to get off so his sisters could have a turn. We walked through the Wisteria Gardens at Westmead (about 50m walk from the hospital) which are full of blossoms and so beautiful. It was a wonderful time spent as a whole family going out together. I didn't expect that to happen for quite some time. Seth wears a mask when outside and passing people. His eyes are very sensitive to sunlight and his skin is also sensitive to the sun. He will not be allowed in crowds for at least another 3-6 months. Luckily it is spring and summer is on it's way so we can do a lot of outdoor activities when he arrives home.
Last night he ate a bowl of cereal - which is a huge deal. His temperatures have dropped back to normal and they are talking about him leaving hospital as soon as next week. This is well ahead of when we thought he would be allowed out. We may have to stay at the unit at this time as they want to see him at least 3 times a week for around 3 weeks. We will play that by ear but he can at least come home for the weekends if this is the case.
The doctors did a CT of his head and chest to try and find out what was causing the dizziness and temperatures. He is on antibiotics for the temps so they don't want to say that the problem is fixed when it could be only covered by the antibiotics. The head scan was fine, the chest found some spots on his lungs. They believe it may be a fungal infection and the cause of the temps. Yesterday they put him to sleep and inserted a camera into his lungs and put some type of fluid in there to flush them out. The fluid has been sent away for testing. The doctors said his lungs look good. Not sure when we will get the results of the fluid test, but we are not expecting it to be anything serious.
As far as graft v host disease goes. It looks like the worst Seth is going to get is red ears, hands and feet. They have said that the higher the counts get, the more likely he will show signs. However, they said that the longer he goes not showing signs of the disease the more unlikely it is that he will get it. So, his counts are rising slowly, but no further signs of the disease. Wonderful, wonderful news as it is a nasty disease to get and could have damaged his major organs permanently or been fatal. It seems we have dodged that bullet - so far, so good. I questioned then whether we would have any graft v leukaemia (which means Sienna's cells will kill any cancer they find) and was told that this can still take place very effectively without the graft v host disease. They said they should see how this very important part of the transplant has worked in the first bone marrow aspiration he has, which should be around 2 months after transplant.
Last night he ate a bowl of cereal - which is a huge deal. His temperatures have dropped back to normal and they are talking about him leaving hospital as soon as next week. This is well ahead of when we thought he would be allowed out. We may have to stay at the unit at this time as they want to see him at least 3 times a week for around 3 weeks. We will play that by ear but he can at least come home for the weekends if this is the case.
The doctors did a CT of his head and chest to try and find out what was causing the dizziness and temperatures. He is on antibiotics for the temps so they don't want to say that the problem is fixed when it could be only covered by the antibiotics. The head scan was fine, the chest found some spots on his lungs. They believe it may be a fungal infection and the cause of the temps. Yesterday they put him to sleep and inserted a camera into his lungs and put some type of fluid in there to flush them out. The fluid has been sent away for testing. The doctors said his lungs look good. Not sure when we will get the results of the fluid test, but we are not expecting it to be anything serious.
As far as graft v host disease goes. It looks like the worst Seth is going to get is red ears, hands and feet. They have said that the higher the counts get, the more likely he will show signs. However, they said that the longer he goes not showing signs of the disease the more unlikely it is that he will get it. So, his counts are rising slowly, but no further signs of the disease. Wonderful, wonderful news as it is a nasty disease to get and could have damaged his major organs permanently or been fatal. It seems we have dodged that bullet - so far, so good. I questioned then whether we would have any graft v leukaemia (which means Sienna's cells will kill any cancer they find) and was told that this can still take place very effectively without the graft v host disease. They said they should see how this very important part of the transplant has worked in the first bone marrow aspiration he has, which should be around 2 months after transplant.
Friday, September 7, 2012
Sienna is showing herself
In the last week, Seth has started to get a little sicker every day. He is suffering from vomiting, diahorrea, dizziness, weakness and high temps. Wednesday his vomiting was so severe that he threw up his nasal gastric tube. This was his greatest fear. He will have to have it re-inserted, but at the moment is too sick to tolerate it. The end that was in his stomach was coming out his mouth and the other end was still hanging out his nose. Once he had stopped vomiting and his panic settled down, he pulled the whole thing through his nose by himself. He was so brave, I just don't think I could've done it. As you can imagine, he is living in fear of having it put back in due to the mistakes made the first time. Unfortunately, he will have to be awake for it this time and I just can't imagine how scary that scenario must be for him.
As he cannot tolerate anything in his stomach at the moment, he is unable to eat or drink and he is losing weight. He has lost 2kg's so far. They are going to try and prevent much more weight loss by putting him on TPN which is supplements that go straight into his blood via his central line.
Sienna is beginning to show her presence, as Seth's blood counts are showing a slight rise. He has 0.3 white cells and 0.1 neutrophils. They are unsure as to whether the symptoms Seth is showing is due to the fact that the transplant is now taking effect and it is part of GVHD (Graft V Host Disease) or whether it is due to something else. We are on the lookout for a rash which is another sign of GVHD and his palms and soles of feet are pink which is another indication the transplant is taking place.
Last night, Seth's temperatures went up into the high 39's and they aren't being controlled by iv panadol anymore. Fortunately, his blood pressure and heartrate are stable, so, at the moment the doctors are comfortable with the temperatures.
Seth is no longer well enough to participate in class lessons, or his favourite, guitar lessons. He is spending his time watching tv/movies or playing on his ipod. Physio's visit every day to try and get him up and moving to retain the strength in his legs. He makes their life difficult by bargaining the amount he will do for them. It's funny to watch the process - it's good because he still has his fighting spirit in him.
As he cannot tolerate anything in his stomach at the moment, he is unable to eat or drink and he is losing weight. He has lost 2kg's so far. They are going to try and prevent much more weight loss by putting him on TPN which is supplements that go straight into his blood via his central line.
Sienna is beginning to show her presence, as Seth's blood counts are showing a slight rise. He has 0.3 white cells and 0.1 neutrophils. They are unsure as to whether the symptoms Seth is showing is due to the fact that the transplant is now taking effect and it is part of GVHD (Graft V Host Disease) or whether it is due to something else. We are on the lookout for a rash which is another sign of GVHD and his palms and soles of feet are pink which is another indication the transplant is taking place.
Last night, Seth's temperatures went up into the high 39's and they aren't being controlled by iv panadol anymore. Fortunately, his blood pressure and heartrate are stable, so, at the moment the doctors are comfortable with the temperatures.
Seth is no longer well enough to participate in class lessons, or his favourite, guitar lessons. He is spending his time watching tv/movies or playing on his ipod. Physio's visit every day to try and get him up and moving to retain the strength in his legs. He makes their life difficult by bargaining the amount he will do for them. It's funny to watch the process - it's good because he still has his fighting spirit in him.
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