Tube free!

I'm sorry for taking so long to update. Ashton had his surgery 2 weeks ago and is doing great! I am happy to say he is officially tube free! The surgery went well, but I have to say, I wasn't that prepared for afterward. As soon as Ashton woke up he was in pain. He didn't even have time to notice or be excited about the tube being out of his nose because now he had a big strange button sticking out of his belly! It hurt him a lot. We knew we were going to stay the night in the hospital, but it turned out he needed to stay 2 nights. This hospital visit was very disappointing for me and my whole family. I will try and start at the beginning...

As soon as he woke from the procedure he was in pain. They gave him something for it while he was under, but he needed more very quickly. It took 2 full hours before the orders got written correctly to give him the medication. There was some mix up with what type to give, I.V. or orally, because they didn't want any thing in his stomache. There was just a big lack of communication and I didn't feel that our nurse was helping. It was VERY hard to watch Ashton hurting. I thought that after all he had been through this past year, radiation, Chemo, and brain surgery, that it was ridiculous he should suffer from such a simple procedure in comparison. But he did, and I filed a complaint. Also, I was under the impression he would be getting any other medications he takes at home while he was there. He mainly just takes Zofran for Nausea still. We are trying to wean him off because he still gets sick if we take it away completely. Well, our nurse's opinion was that if he doesn't have any food in his stomach then he didn't need the Zofran. I had to explain that the nausea comes from his brain surgery and also from cutting him off cold turkey. Pat and I were feeling that we should have brought our own stuff from home, it was so difficult to get it! So needless to say, I was frustrated. Also, I had no idea Ashton would vomit up pretty much everything he took in for two days! I guess this doesn't happen to every one. And he would vomit blood, very scary! At one point I though to myself, what did we do??? I wished we had just left the NG tube in his nose, this was so awlful. But as the days went on and we were released to come home, it got better. I love it now and he loves it too! When he isn't eating, he doesn't have any tubes dangling and getting in the way. It is very nice! He still isn't interested in eating on his own, but I'm hopeful it won't be long. He is wanting food in front of him more and more. He asks for things and has even licked a graham cracker and got some crumbs in his mouth and hasn't spit them out. That is huge!

The other procedure he had done was to remove his port. This was the central line where all of his chemo and other medications were given. It used to stick out of his chest so much that his scar from the surgery had strectched and was quite big. The doctors fixed that when they took it out and now he has a nice thin scar. This was a huge milestone for us, one we couldn't wait for. It was great! We also got rid of a bunch of his left over medication and supplies. The nursing staff will sometimes travel to South America to treat children and the medication we gave them will be used over there. We also got rid of all of the home health care nursing supplies....we gave them back to the nurse who cared for Ashton and she will use them and was very grateful for them. Getting this stuff out of the house was a big step. I was a little unsure because I worry about the big "what if" and will we need them again some day? But, Its healthier for me to think we won't. And deep down, that's what I believe.

So, next up is the MRI...ugh. It is scheduled for Friday the 26th. I will let everyone know how that goes.