Austin heads back to Methodist...

Sorry for the delay in posts. It has been very tiring in our household. Austin has had a few bad nights. Clinic went fine on Saturday. He got fluids and his labs looked good. He said as long as he kept up his fluids he didn't have to come in on Sunday but would have to call to report a follow up to the Bone Marrow unit at 9:30 on Sunday. Austin also has had a lot of trouble walking. We think his feet are still very sensitive but he also tilts his head back like it is to heavy for his body. Not sure what is going on with that. He decided to start crawling again since he can't walk. Still trying to be so independent. Last night was the worst night ever. He would only sleep for 30 to 45 minutes at a time and then be up screaming from the top of his lungs the rest of the time. He would want to lay in his bed and then wanted the couch and then back to his bed. He just couldn't get comfortable. He would call me over to him and then push me away. He didn't know what he wanted. He was pointing to have movies put on and then have you turn them off.He stopped wanting to drink from his sippy cup and would only sip a little bit out of a straw. It was such a long night. He was miserable. I had to call the floor and they thought it was gas pains. He had taken a medicine earlier that day to help him have a bowl movement and said it could gas pains later on. They had me give him some benadryl to see if that would help. It didn't. I gave him a warm bath which he enjoyed. He actually was falling asleep in the bath tub and didn't want to get out. When I was putting on his diaper after his bath he expelled a lot of gas, so it could very well have been gas. But he still was not sleeping. At 3 am I took him for a car ride to see if that helped. He did indeed fall asleep but as most kids he woke up as soon as we got home. 9:30 am couldn't come soon enough to call the floor again for follow up. I told the nurse what was going on and she said she would let Grimley know and see what he says. Wasn't but a few minutes after I hung up the phone that Grimley was calling back. He said sounded like he needed to see him so he would call back after they got arrangements done down in clinic. About a half an hour later a nurse called from the hospital to tell us to head over and prepare to stay. I asked to stay for the day or over night? She said overnight, they are admitting him. So I packed a few things and we headed over. They hooked him up to fluids, drew his blood for labs and gave him some morphine to relax him. Grimley came in and feels that it still could be a drug reaction and it very well could be another drug doing it. So we are backing off some of his drugs. He said it sounds like insomnia which one of the meds has as a side effect. It is a rare side effect but can still happen. He suggested we try and keep Austin up as much as we can during the day and then before bed give him a drug to relax him to sleep. He is also ordering a CT scan from his neck down to his waist. Not that he thinks anything is going on but wants to rule everything out. He did say he didn't think it was any thing to do with the Neuroblastoma as he would think if it was he would of found some in his brain. As Dr. Grimley says "we are on a wild goose hunt". He said he was still puzzled and was going to pick someone else's brain to see if they could come up with anything.

Austin and I took a nap and then I had to wake him up. Boy was he not happy. It was so hard to keep him up. I got him to drink 2 ounces of juice and we watched movies. He ate some mini vanilla cookies but didn't want anything else to eat or drink. For some reason he doesn't want to drink the milk. The only reason he drinks the juice is because it is kind of forced upon by me. I use the Juicy Juice box drinks so when Austin puts the straw in his mouth I can control more going in by squeezing it. He drinks it but pushes it away.

In a way I am glad we are here because maybe we will get a good nights sleep. They can control his pain and frustration here with drugs, at home I can not do anything but try and comfort him. I am sure this is not the place Austin wanted to be for his second birthday but as bad as he feels right now I don't think he would care too much about celebrating. I am praying tonight that they can find out what's causing all of this and that is is fixable and we can have our old Austin back. I miss old Austin so much. I miss my hugs and love from him. I miss him dragging all of his toys out to the living room. I miss seeing him run around all over the house chasing the dogs. Please lord, help us find out what is going on with Austin and to bring our old Austin back!

Elizabeth