Wednesday, December 29, 2004

We will not give up

I was very worried about Dylan yesterday. When I arrived at hospital in the afternoon to take over from Tim, Dylan had a blood nose and it did not stop for an hour. His platelets were 55, so I doubt it was due to that. Then after a few hours he brought up a blood clot about the size of a ten cent piece. It worried Dylan and I, but the nurse assured me it was due to the blood nose. His temperature has been good though, about 37.9 most of the time. Dylan went to sleep by midnight. Dylan woke at 11am and he vomited as soon as he sat up, and instead of the usual feed that he brings up, it was a dark brown colour. I told the nurse that he does not usually bring up such a colour, but again she said it was likely due to yesterday’s blood nose. His blood pressure was also low and the nurse called the doctor in, after she tested it 4 times. The doctor told her to continue to monitor it throughout the day. He had more blood cultures done and a FBE/Electrolytes blood test. Tim came in at about 12pm, but by 1pm Dylan was asleep again. The blood tests came back saying that his Magnesium and Potassium levels were very low, and the doctor said she wanted to repeat the test as his Magnesium should not be that low considering he has been having oral magnesium since his last chemo. The results were confirmed, low Magnesium, a salt that stops your muscles from cramping up and low Potassium, this is what makes your heart pump (so it’s pretty important). Potassium and Magnesium infusions were started and he will have to have fingers pricks after each infusion to check the Potassium levels, as they need to be between certain ranges or it can be life threatening if it is too low or too high. Later in the day, it was decided to give him another blood transfusion. This gave him a good pick up and by 10pm his blood results were showing that the Potassium and Magnesium levels were back to normal and so was his blood pressure. If they stay normal after tomorrow morning’s test, then we may be able to bring Dylan home. YIPEE!

I got Dylan’s bone and CT scans on disc today and I am glad that I did not hesitate to look at them. The positives were that his lungs and liver are completely clear at this stage, but that can change quickly if he does not get treatment, and that will be fatal. Seeing the tumors actually helped me to get my head around the whole thing. It’s a hard thing to comprehend, not being able to physically see what is wrong you’re your child, but knowing that things are very wrong…if that makes sense! Being able to visualize his tumors has put a picture in my head of what we are fighting. I have now established that it seems to have all stemmed from his right adrenal gland and his abdominal tumor is being fed it’s blood supply by his right kidney.

The campaign is up to $72,000 now, still no where near enough though. All I know is that I need to get Dylan to New York a.s.a.p and I am aiming for late January. I am still anxiously waiting to hear back from companies and the media, but nothing yet. I am still looking into the Australia Post website and have removed the link until I can see it up and running officially, to avoid confusion.

Well I am exhausted and it’s my suppose to be my night off while Tim stays in hospital with Dylan. Mind you it’s 1am and I am still on the computer, replying to emails and doing paper work for the campaign. I will not rest until I know Dylan has beaten this monster, I will not give up and I will make sure Dylan doesn’t either.

Love & Hope
Melissa