Matthew's Room

Diary1st - 31st July 2000

  Monday, 31st July 2000
To check on my heart function, I had another echocardiogram today. Everything still appeared to be the same. The plan now is to have a CT scan tomorrow and another general anaesthetic on Thursday, where the ENT doctors will do a bronchoscopy to have a look inside my throat and the cardiologists will do another echocardiogram, but this time from inside my esophageus to get a better look at parts of my heart.
  Friday, 28th July 2000
Another chest x-ray today was still clear.
  Thursday, 27th July 2000
I spent the night in the sleep study lab, where I was hooked up to lots of probes that monitored my breathing and brain waves to tell if I was sleeping. Nothing of any significance was found.
  Tuesday, 25th July 2000
Last night I was started on Lasix, to try and offload any excess fluids that may be contributing to the problem. The night was a little bit better than the night before. I still need oxygen 24 hours a day. My legs are both sore from when I was having the Fragmin injections which caused some huge bruises. I haven't walked for nearly 3 weeks and so now the physios are coming in to help me with some exercises. 
  Monday, 24th July 2000Photo Album
I had a bad night last night, my oxygen saturation kept dropping every time I changed position. The doctors still aren't sure where to go from here, some more tests are being scheduled. An E.N.T. specialist came to see me this afternoon, but couldn't see anything obvious, but she will have a closer look next time I am under a general anaesthetic.
  Thursday, 20th July 2000Photo Album
There was a Pyjama Party at the hospital today, lots of people came to work in their pyjamas. There was a concert in the Starlight Room too, with lots of special guests. Monica, my favourite Playschool presenter, came into my room to say hello, she also sang a special song for me at the concert.
  Monday, 17th July 2000
I had another general anaesthetic today to put a 'long line' in my arm. It is only a temporary line, used for IV medications. The line in my neck has been taken out. The Fragmin injections have been stopped, they were causing big bruises on my legs, instead I am now on a 24 hour a day infusion of Heparin.
  Friday, 13th July 2000
I had an ultrasound of my neck this morning to get a closer look at my thyroids. It showed that one was smaller than it should be. I am now on a daily dose of thyroxine to bring my levels back to normal.
  Wednesday, 12th July 2000
Some initial blood tests have shown that my thyroids may not be working properly as well. This is most likely due to the Total Body Irradiation I had during my last bone marrow transplant. The doctors from the sleep study lab came to see me, they would like me to spend a night in their sleep lab so that they can monitor my breathing overnight.
  Tuesday, 11th July 2000
To help clear the clots, I have been started on daily injections of Fragmin, an anticoagulant. It helps by stopping more clots forming, which allows the body to take care of the ones that are already there. This should clear some of the pressure through the blood vessels in my lungs. 
  Monday, 10th July 2000
The results of Friday's lung biopsy came back today. I don't have GVHD of the lung, as it was first thought, but some of the blood vessels in my lungs are clogged which is causing the increased pulmonary pressure. It is not known for sure what is causing it, but I will be having an anticoagulant injection each day to clear the blocked blood vessels.
  Sunday, 9th July 2000
I was transferred to Camperdown Ward this morning. In the evening my pulse rate started dropping to low levels (53 bpm). The rest of my stats were normal so it was just monitored overnight.
  Saturday, 8th July 2000Photo Album
I spent the night in the Intensive Care Unit (ICU), where a nurse is assigned to each patient and they stay by your bedside the whole time. The tube to help me breathe was taken out today and I was put back on the oxygen mask. I was about to leave the ICU and go to Camperdown Ward when my oxygen saturation started fluctuating so it was decided to keep me another night in ICU.
  Friday, 7th July 2000Photo Album
I had surgery this morning to have a lung biopsy as well as a bronchoscopy. The bronchoscopy allowed the doctors to have a look inside my airways, they then put in some water and then drew it back out so that they could test it. After the surgery I was sent to Intensive Care, so that a close eye could be kept on my breathing. I still had a tube down my throat, that was hooked up to a respirator, to help me breath. I also had a tube in my chest to drain any excess air and fluid. A triple lumen central line was put in my neck to facilitate taking blood for tests, to put in medication and to measure the Central Venous Pressure. I also have 3 other cannulas and a nasal gastric tube in as well. Along with all this I had a series of probes attached to measure my vital statistics. I was kept doped up on morphine for the pain and the fact that all the tubes would feel uncomfortable.
  Thursday, 6th July 2000  *** My 4th Birthday ***Photo Album
Today is my 4th birthday. I had lots of visitors and presents, but I wasn't feeling very festive. I still need the oxygen mask, the amount varies throughout the course of the day. All the tests I have had so far show that my lungs appear normal, so I will have a lung biopsy tomorrow so that the doctors can get a closer look.
  Wednesday, 5th July 2000Photo Album
I am getting used to having the oxygen mask on now. I saw the cardiologists again today, but still no answers. The respiratory doctors will now have a closer look at my lungs again to see if they can find anything. We went to the Sensory Room with Sandra, which has lots of great interactive lights and touchy feely things, but I was too grumpy to enjoy it.
  Tuesday, 4th July 2000
Further tests this morning. I first went to Nuclear Medicine for a scan of my lungs, I didn't like it because I had to be strapped down so that I wouldn't move. I then had a CT scan and a range of blood tests. Still no answers as to the cause of the problem.
  Monday, 3rd July 2000
I had a persistent cough all weekend, so I went to clinic for a check-up. I had a chest X-Ray to check for any infection. It showed that my heart was enlarged. I was breathing a bit fast, my pulse rate was also a bit high and the oxygen levels in my blood were a bit too low. I had a series of blood tests as well as being seen by the cardiology team and having an echocardiogram. There is too high a pressure in my pulmonary artery and in the blood vessels in my lungs, which has enlarged the right side of my heart and the back pressure has also then enlarged my liver. I have been admitted to hospital, I am in the Faithfull Ward this time, until the condition is understood and treated. I have to wear an oxygen mask to keep the oxygen level in my blood at a reasonable level.


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