Wednesday, July 15, 2009
Good to be home!!!
Lucas was released from the hospital yesterday afternoon and it has been so nice but very overwhelming. A rep from our home health care co. came by last night and went through a number of things with me and anxiety doesn't even come close to how I'm feeling right now. He is on so many medications which need to be given every 2,4,6or 12 hours. There's so much to remember. In the hospital the nurses would come in and say, "O.K. it's time for this med or this shot or this cream," and I would give it to him. Now, it's all on me to remember every measurement, frequency, if it's refrigerated to let it get to room temp, etc. Needless to say I didn't sleep well last night. I need to teach Aaron how to administer some of this stuff so that I can have some help. But I must say, Lucas couldn't be happier. He must feel relieved to be out of that hospital room. I know I am. Kaden and Jonas spent the night at my parents the last few nights and came home early this morning. They were so excited to see Lucas but seemed a little nervous looking at all the tubes hanging out of him. One cool thing is that since he's been home, he has guzzled his formula down. Hopefully I won't have to tube feed him very often. His arm seems so be moving a little more every day which is a good sign. He also doesn't seem to be in any pain. Dr. Brugger's said that it's an indication that the tumor is shrinking. He has to go have some tests done to check his kidneys and hearing between each round of chemo. It can cause side effects and so they monitor him to see if they need to lower the dosage of chemo for next time. I hope everything comes back normal. We also sent out the paperwork to get genetic testing done. They will test Lucas' blood to see if he has a mutation. If he does, then that means that either Aaron or I is the carrier and all of our kids will have a 50% chance of having AT/RT. If Lucas doesn't have the mutation then it was random and the chances of any of our other children getting it is slim to none. We would like to find out because if we are carriers, then Kaden and Jonas could get tested and we would be more aware of symptoms and get them scanned. Lucas is scheduled to start his next round of chemo Tuesday of next week. Well, I better get some things done around the house while I'm home. And maybe take a nap to catch up from last night.