Thursday, March 24, 2005

Lots of energy, lots of diarrhea

Well, Dylan is fine in himself, actually very full of energy, but the diarrhea is not under much more control that it was last Friday when he was admitted. They started Dylan on a pre-digested formula via his G-tube and the Octreotide continues 3 times a day. Despite all this, they have decided to discharge us tonight, and I continue with the feed and Octreotide injections and also some oral Imodium back at Ronald McDonald House. If he is still having diarrhea over the weekend then chances are he will be admitted again on Monday for TPN (IV feeding) again. The 7th round of chemo is also scheduled for Monday. The good thing is that we will be out of hospital for 3 days and we can spend Easter Sunday at Ronald McDonald House. The other big factor is we will save about $3,000 a day by not being hospitalized. I am getting so concerned about what all this is costing. The Octreotide cost $854 just for the 3 days and the new feed is $220 for one weeks worth! But I guess it’s cheaper than if we were in hospital. Unfortunately I have to pay for this on my credit card and not out of the fund because it is not supplied by the hospital, but by a separate pharmacy. We re just waiting now (6pm) for the nurse to put Dylan’s TPN up so it can be tapered ready for discharge, so that his glucose levels don’t drop to dramatically. Then we can go. So I estimate we should get out at about 8pmor so (I hope). Dylan was up to his old tricks today. First he made blue slime with the Child Life worker, then he played and sang songs with the clown doctors, followed by a win at Bingo (he won a Boggle board game) and then somehow he managed to get $5 out of the discharging nurse practitioner. He had taken her calculator then talked her into buying it back off her! He is so cheeky! Then one of his favorite nurses came in and gave him a $1 note as well!

I went back to Ronald McDonald House this morning to have a shower and check the mail, and there was a huge parcel waiting for us at the front desk. When I got into the room and opened it, I was in total shock. A very kind person who works for Australia Post, that we have never met, sent us some “Aussie” food! We have Milo, Vegemite, Nutri-Grain, Cheese, Twisties, Tim Tams, 2 jars of Dylan's favorite mayonnaise, the list goes on. I laid it all out on the bed and was overwhelmed with the support we are getting, I just started to cry, but tears of joy (sounds silly I know). I quickly rang Dylan and told him what we had received, and he squealed and said “Bring me the Twisties, Burger Rings, Cadbury Dream chocolate, Redskins, Freddo Frogs and Nutri-Grain…hurry back!” The best thing was that there was a big bag of Cadbury Easter eggs and Yowies which I can get the Easter Bunny to give Dylan. I was stressing a bit because Dylan is not very keen on the different flavor of chocolate in America and thought he would be angry with the East Bunny! So Thank you so so so much to Danielle Scott-Flanders from NSW, Australia for the wonderful surprise. Please email me your address so that I can send you a personal thank you note from Dylan.