Matthew's Room

Diary1st - 31st August 2000

  Wednesday, 30th August 2000Photo Album
I am still having my hydrotherapy sessions each morning, which I enjoy thoroughly, Mummy or Daddy come in with me too. I had to have a dental check this morning because we have found some small cavities in my teeth. I will be getting them fixed next week. It is thought that maybe the radiation I had affected the production of saliva and/or the teeth themselves. The problem is only very minor at the moment, but will need to be looked at further. Just before I got out on a gate pass, the Clown Doctors came to visit, to make me smile.
  Tuesday, 29th August 2000
No gate pass today, because I needed to wait around to have some things checked. My thyroxine dose has been increased slightly.
  Monday, 28th August 2000
To try and get me walking again, I have started hydrotherapy sessions in the pool each day with the physio. To begin with I am just standing up and taking a few cautious steps. I had another gate pass for a few hours.
  Sunday, 27th August 2000Photo Album
I had a gate pass yesterday and another today. My oxygen saturation is staying at a reasonable level most of the day, however, at night I have still been going back onto the oxygen mask to get a higher level. While I was out on my gate pass today, I went to Matthew Jackson's 4th birthday party, which was at a local park. It was good to get outside again.
  Friday, 25th August 2000
My oxygen saturation was better overnight, so this morning I swapped back over to the nasal prongs, which meant that I could go out on a gate pass for a little while. 
  Tuesday, 22nd August 2000
Because my oxygen is staying too low, I have switched back to using an oxygen mask, which can deliver more oxygen,  instead of nasal prongs. My neck and face have become very puffy again, which might be contributing to the oxygen problem. This is probably due to the steroids, so the dose has been lowered, but it also may be my thyroid, so another thyroid function test has been ordered. I also had an X-ray today to look for anything obvious.
  Monday, 21st August 2000
My oxygen saturation dropped further over night, so I couldn't go out on a gate pass today.
  Sunday, 20th August 2000
I had another gate pass today, but when I got back to the hospital my oxygen saturation was very low. The last couple of days must have been too much for me.
  Saturday, 19th August 2000
Yeeeeaaahhh!!! I got out on a gate pass for a few hours. It is the first time I have left the hospital in nearly 7 weeks. I still need extra oxygen, so we have oxygen cylinders for the car trips and an oxygen concentrator at home. I still can't walk so I just sat at home and watched some videos and played with some of my toys that I hadn't seen for a long time. It was good to go home, even if it was only for a little while.
  Friday, 18th August 2000
I had fun making pikelets today with Sandra, we even made some chocolate pikelets. I had a short ride on a bike today, it was the most exercise my legs have had in 7 weeks. I didn't get very far but it was a start. I still can't walk because my right leg is still too sore. Everything is being organised so that I can go home for a few hours tomorrow on a gate pass.
  Thursday, 17th August 2000
I had a series of echocardiograms today. One just before a dose of the Iloprost and another immediately after. The first showed that my pulmonary pressure was slightly better than before any treatment, but the one after showed a significant improvement, even though it still wasn't in the "normal" range yet, but better than last week's echocardiogram.
  Wednesday, 16th August 2000
Today I swapped over from using an oxygen mask to using nasal prongs. I didn't like it at first, but eventually I accepted it. I needed to do this because I need less oxygen when I am using the nasal prongs, and I have to be on the lower amount before being allowed home. We are now looking at continuing the treatment at home, I still need oxygen 24 hours a day so that is being arranged. I hope to at least get out on gate passes over the weekend.
  Friday, 11th August 2000Photo Album
I am feeling a bit better today. My oxygen saturation is more stable and staying between 90 and 100% most of the time. I like to go out for rides around the hospital in a stroller, I still need to take oxygen with me. I visit my friends down in Camperdown Ward while I am out.
  Thursday, 10th August 2000
I had a bad night last night with diarrhoea and vomiting. I have not been eating much and just drinking high protein milk and a special juice the dietician put me on. I had another echocardiogram today, just after a dose of iloprost, it showed that my pulmonary pressure was lower than what it had been, which means that the iloprost might be working. 
  Tuesday, 8th August 2000
I was moved up to the Variety ward today, so that I could start on a new medication, Iloprost. It is supposed to dilate the blood vessels in my lungs which should relieve the pressure on the right side of my heart. It is taken via a nebuliser five times a day. It has to be given in an oxygen tent so that any escaping medication can be captured.
  Monday, 7th August 2000Photo Album
Cathy and Karen put on a Pirate Party for me today. We had lots of fun searching for treasure. We sang lots of pirate songs and ate pirate food (fruit and marshmallow swords).
  Saturday, 5th August 2000
I am feeling a bit brighter and more alert. The Heparin was stopped today, so I am no longer hooked up to the IV pumps. I have been going out for rides around the hospital in special little car. Although I need to bring an oxygen cylinder with me everywhere I go.
  Thursday, 3rd August 2000
After consultation with anaesthetic doctors, ENT specialists and cardiologists, it was decided not to go ahead with today's scheduled procedure as the risks involved were too great for the amount of information that might be gained. However, my oxygen saturation is improving slowly and I am requiring less oxygen. It is still fluctuating with the best times being in the evening through until early morning. I was started on Warfarin today, in parallel with the heparin I have been having. It is an oral medication where as the Heparin is a continuous intravenous infusion.
  Tuesday, 1st August 2000
The front of my neck was very sore today, it has been bothering me for the last few days. I had a CT scan on my neck and chest, it may show the cause of the irritation. My oxygen requirement is still fluctuating, it seems to be the best in the evening when I need less oxygen. The cough is still there too, its cause still hasn't been explained either, but it appears to help my oxygen saturation. I had visits from lots of doctors today, the respiratory team, anaesthetic doctors, cardiologists as well as my regular oncology doctors. 

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Last Updated : Sunday, 03 October 2004

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