Dylan was admitted yesterday morning weighing in at just 13.2kg! They started TPN and after just one night on the TPN, Dylan is doing FANTASTIC! He still has diarrhea but now at least his body has much needed nourishment. Today we got a day release pass from hospital which gave us from 12pm – 6pm back at Ronald McDonald House. We watched the new Angelina Jolie movie “Sky captain and the world of tomorrow” and I had a chance to have a shower and do some washing, it was great! We also received a very special package from Dylan’s school, Skye Primary. About a week ago there was an article in the Hearld Sun, about how the students at Dylan’s school had made him a quilt. I had seen a picture of it on the Herald Sun website, and now that I can see it in real life, it really is amazing. Oh it is so spectacular! There are Australian animals all over it and messages from the students. It is so beautiful that we cannot use it as a quilt…It will be displayed on our wall instead. Thank you to everybody involved in such a special gift. And yes, it made me cry…well everything makes me cry these days!
When we arrived back at hospital, Dylan finished off a picture he has been working on for his Nana (grandma) and then he was so full of energy! He took off with his I.V drip down the hospital corridors and into the playroom for a game of Monopoly (Monocoly as he calls it) with one of the volunteers. It really has lifted my spirits so much to see him so full of energy again, I didn’t realize just how run down he was until now. Dylan also has his first ever wobbly tooth! He loves to freak me out by stretching it out as much as he can, it’s so yuk! Well, the tooth fairy will be paying him a visit very soon I would imagine. I have added more photos to Dylan’s photo album, including photos of the beautiful flower arrangement Dylan made me for Mother’s day and the drawing Click Here to view them. We are hoping to get released from hospital tomorrow, as long as the home TPN is organized for tomorrow night and if his blood levels remain good. We had to wire more money from Dylan’s trust fund in Australia because home TPN is not supplied by MSKCC, it is done by a separate entity which required money put into their account. Home TPN costs approx $250 U.S dollars a day. This is a lot cheaper than having it in hospital because the hospital bed alone is $2,200 a day!!! The nurse showed me how to prepare the TPN at home and how to attached Dylan to it. I have to mix in the vitamins and fat into the bag solution, and of course I must ensure that it is done in a sterile manner. If there is any contamination, it goes directly into Dylan’s blood stream and can cause an infection immediately. The nurse gave me a list of all the things that can happen if it is not done correctly, and what to do if problems occur. I also have to test Dylan’s urine everyday for certain levels eg: glucose. Tomorrow’s lesson will be on using the pump. I sure am expecting my nurse’s degree in the mail when this is all over! I am happy to do it though, if it means more quality time with Dylan out of hospital, then it’s a pleasure to do. Depending on Dylan’s MIBG scan results next Wednesday, I estimate the TPN will continue for about a month. By then, hopefully the diarrhea issue will be resolved and I can start up the G-Tube feeding again. If we do get home for the weekend, we plan to go to the Maynard’s in Long Island. Sunday (Mother’s day) Dylan says he wants to bake me a cake and it will be a lot easier to do it there than at Ronald McDonald House. Well, I think he actually wants to eat the cake mix from the bowl, but I am impressed by his excuse!