Tuesday, November 25, 2008

Keep it Going

Well it isn't an allergy to the milk. So now they are giving me two options:
1.GJ tube placement 2.redo fundoplication. I am not doing a GJ tube so my only option now is to go back into surgery and redo the fundo. I'm not to crazy about taking him back into surgery. I just feel like now we are backed up into a corner and I really need to do something to help him. He throws up so much! It is hard seeing him go through it. It comes out of his nose and his little face gets really really red. It then affects his breathing and he chokes on it. I hate it. The only other thing I have decided to do is have a Gastric emptying test done before the surgery. I'm a little concerned because at night he seems to throw up at around the same time every night. It also seems like it is a large amount compared to how much he is getting fed at night. I just want to make sure I've covered everything and haven't missed anything. We will do the test on Dec.2 and then on Dec.5 he will go into surgery to redo the fundo. They have told me he will be admitted into the hospital afterwards for a few days because of all his issues. They just want to monitor him. As far as his seizures I've called to try to rush the ketogenic diet. My heart breaks every time I see him have these seizures. He has them all throughout the day!!!! They also seem stronger. It is so hard to see him trying to stand, hold his head, etc.....then the seizures sneak up on him and screw it up. So this Friday after Thanksgiving I will pick up paper work for blood work to check his med levels. They want this done before we start the diet. I feel like a mad woman trying to fit everything in and get everything done quickly.

These last couple of weeks I feel like I am always on the stinking cell phone. I have been calling people left and right. I sometimes want to throw it out the window. I've been calling doctors left and right. I've been scheduling, rescheduling, notifying people about what is being done, med changes....blah blah blah!!!!!!!!!!! It seems like forever for some offices to call back so I turn into one of those pestering parents that calls back until I get things done. So, finally I feel like I've got things moving along again. I haven't had a full emotional melt down yet. I've had plenty of bad days though. Then when I feel like I'm going to let it all out I shake it off and think to myself, I have to keep it going no matter what...for now. I really need to stay focused right now. We have very busy weeks up ahead.

As a matter of fact we are currently in San Antonio. We are here getting him 6 hyperbaric treatments. We left Corpus Christi late Saturday night and got here at about 3am Sunday. Monday thru Wednesday we will have two treatments a day and then go back home for Thanksgiving. I wish we could do more throughout the week. However, I am very happy we could squeeze these in this week. So by the end of the week he will have had a total of 55 hyperbaric treatments. By the way, those of you who worked so hard with the raffles and helped us, this would truly not be possible without you guys. The only reason we are able to do this is because of your caring hearts and the money you raised for this. I thank you so so so much. I will keep you posted.

OH, Happy Thanksgiving & may the Lord's blessings be upon your families!