Sunday, March 20, 2005

Dylan is on TPN and hospitalized

We are still in hospital and Dylan is on TPN (IV feeding) and Flagyl antibiotics in case of any bugs lurking in his bowels. Yesterday and this morning the diarrhea had stopped and things were looking good, but this afternoon the water motions re-appeared in full force! He is so well in himself though, very happy, bright, no temperature, no nausea and his appetite is good. In fact he is loving Kung Poa chicken from the local Chinese shop and eating grapes and apples and for dessert he is enjoying coffee flavored ice cream. I'm sure it's only a matter of time before the doctors cease all food for him, which will awful...Dylan will ask for food constantly. The TPN is because we are not using his G-tube for feeding and his weight is now 15.4kg. The diarrhea is still a mystery. The stool samples that were tested have come back as negative for any bacterial infections but that doesn’t rule out viral infections. I am not sure if blood tests will show that, and will ask the doctors about it tomorrow. One thing that does concern me is that his white blood cells and neutrophils are going down, and so is his hemoglobin and platelets! He had blood on Friday as it was 78 and today his blood is only 82. Platelets were transfused yesterday morning. Last Friday his white cells were 4.4 and neutrophils were 3.6. On Friday when he was admitted they were, white cells 1.5 and neutrophils 1.1 and today’s count has dropped again to white cells 0.9 neutrophils 0.5, he’s almost neutropenic again! Chemo was done over a month ago now. I have a sneaky suspicion that tomorrows scheduled chemo may be delayed until his counts come back up. The doctor on duty over the weekend said that the higher counts a week ago may have been false due to the GCSF that was given days prior to that test. He also said that white cells may go down due the body fighting a viral infection. Well, tomorrow is Monday and that means the Neuroblastoma team will be all hands on deck, so I can ask them if there is any test that can be done to determine the source of the diarrhea and why his counts are dropping. I will also find out what they want to do about the scheduled chemo, that in itself will cause diarrhea, but at this stage his diarrhea can’t get any worse I guess. I also have to push to have his TPN as an outpatient to get us out of the costly hospitalization. I feel that because he is so well, that I can care for him at Ronald McDonald house, even if we go back to hospital every morning and stay til the evening in the day ward, I know that would cost less and he could have all the tests, transfusions, chemo and any other medication they want to throw at him there.

You can tell that I have more internet access in you can see I have jazzed up the site a little and figured out how to do it, finally! Dylan spends most of the day chatting to his room mate, watching cartoon channel and playing with some of his toys we brought from Ronald McDonald House. Teen Titans is his favorite cartoon now, along with Sponge Bob, Scooby Doo, Tom & Jerry and The Grim Adventures of Billy & Mandy. He also likes to stir up the nurses, it’s very amusing and we all laugh at his very adult like sense of humor. He is still such a character that everybody falls in love with instantly. Dylan has just developed an interest in Star Wars too, he even made me buy him his own light saber. There is one good thing about being in hospital, they have all the Star Wars movies on video! Dylan can also enjoy bingo and his Karate lesson tomorrow, which is only done on Mondays. As for me, well I will hang out on the internet I guess. It’s handy now because I can hook up Dylan’s lap top directly into his room, so I don’t have to leave him at all, I just get booted off when Dylan wants to play a game. His favorite computer game at the moment is Roller Coaster Tycoon parts 1 & 2 and he wants part 3 but he will have to wait until I can work it into the budget. I did manage to download the demo of part 3 so he has that for now.

With all the Thank you’s I have mentioned in the past, I have another vital one to add Caringbridge . Without their service, Dylan’s website would not be possible, and this website is a crucial link for Dylan’s support. I really would be lost without it. So thank you Caringbridge, your service is fantastic and it does assist the lives of many sick adults and children.