Since the journal update below...
Its midnight and the doctors just came in to tell me that Dylan's blood cultures are positive for a line infection. I have been told he will remain in hospital for 10 days post a negative result, meaning if tomorrow's blood cultures are clear it will be 10 days from there. Even if tomorrow's cultures are clear, he will be lucky to be released on the day his uncle and cousin leave New York. Dylan's temperature is now 40.5 but his vital signs are still good at this point. If his vitals signs deteriorate then they will be forced to remove his hickman line and put in a temporary line. At least with it being a confirmed line infection, I know this fever has nothing to do with over doing it at the car racing yesterday.
What a fantastic day we had at Pocono Nascar racing! Dylan’s eyes lit up as he watched the cars go round. He was cheering and getting right into it. A big thank you to Nextel and Ronald McDonald House for the wonderful trip. We headed out at 7:30am and traveled through the Lincoln tunnel and New Jersey to get to the race track at Pennsylvania. Dylan played with his friend Taylor all the way there. There were a sea of cars and many RV’s (recreational vehicles), we call them camper vans in Australia, but these RV’s looked like real deluxe models. The weather was very hot so we were smothered in sunscreen. Regardless of the sunscreen I put on, I still look like a lobster but Dylan did great. Dylan had his lime green sun umbrella and had his own little oasis under there with ice creams, drinks and a back chair, all he was missing was a sexy girl waving a feathered fan at him and feeding him grapes! We arrived back at 8pm. After a bath each and hooking Dylan up to his TPN, he fell asleep, it was a big day full of excitement. I checked my emails and prepared the room for my brother’s arrival on Tuesday and finally went to bed at 2am.
Dylan woke at 3pm to use the bathroom and was fine but then he woke at 5am with a temperature of 39.7. Fearful that his blood pressure may be an issue like the last fever episode, I had us both out the door and on our way to the urgent care center at MSKCC by 5.05am. Thankfully Dylan’s blood pressure is fine, but he has been admitted for a tune up. Dylan continues with a temperature of almost 40 and has had both a blood and platelet transfusion along with 3 antibiotics started for the fever and GCSF to raise his ANC (neutrophils) as it is 0.5. Dylan has been shaking with the fever and vomiting as Tylenol doesn’t seem to have much of an effect on him and they won’t allow me to give him Panadol as it doesn’t appear to be a registered drug here in the U.S.A. Blood cultures have been taken from his lines as there is no obvious signs of infection anywhere else. If his cultures show he has a bug in his line, they may need to remove his lines and he will be hospitalized for up to 10 days on antibiotics. I know Dylan didn't want chemo this week but this is not a good way to get out of it! We are hoping the fever disappears soon and nothing grows in the cultures so that we can hopefully be discharged by the end of the week so we can spend time with my brother and my nephew. Dylan is so upset that this has happened now because he was so looking forward to playing with his cousin and showing him around New York.