Well it was yet another long day but now we are home and YES, we survived!
The first appointment was with the Cardiologist. He finally contacted me about Carson's holter monitor and told me there were a couple of "events" of bradycardia. Again Brady means slow and Cardia has to do with your heart. So apparently he had a couple of events where his heartbeat dipped down to low numbers that are of concern. So what does this mean for Carson? They are going to bring out a monitor to my house where it will somehow send his rhythm through my telephone. Has anybody ever heard of this or had and experiences with this? I would love to hear from you. The doctor then explained that his heart will be monitored through a company in Pennsylvania and if he has any episodes regardless of the time, the company will call me immediately and find out what he is doing and make sure I'm aware of his problems. If it is something serious, Dr A will be paged at that time as well to see what he wants us to do. I am very impressed with this technology.
He also wants me to call Apria and have them fax over an order for him to sign off on for a pulse ox for Carson when he is asleep. He wants to make sure that Carson is staying above 95% and anything below that he will consider putting him on oxygen at night as well.
So then it was off to GI. This is the partly good news. Dr K told me that he wanted to change Carson's reflux medicine and if we can find one that does good for him, he thought he would start eating and even sleep for me. He said that the reflux he is experiencing is probably causing more than 50% of his problems. He said that if Carson is associating the pain when he eats, he isn't going to eat. He said that because this behavior is going on now (at age 2), he wants to get aggressive to finding a medicine that will help him now so that he doesn't continue with this behavior. He also said he wants to try a different medicine that has a longer acting control so that hopefully he won't wake up in the middle of the night with pain that is associated with heart burn. So here is the good news, if we find that the new RX is working, he will start eating more orally, we will be able to lose the NG tube in as soon as a month!!!!! Now he said that it may take two months but he thinks we are definitely seeing the light at the end of the tunnel.
So this brings me to my last bit of news on Carson, we are leaving the allergy clinic and the special care clinic. Dr K said we are seeing too many doctors and they are all stepping on each other. So Dr K will take care of his reflux, eating issues, and allergies, and Pulmonary will just stay on top of his asthma related issues. Of course we will stay with Cardiology but we won't see him now until after the 30 days and then Dr K said we will just go from there. That meant so much to me that he is willing to step up and do more than just the GI part. Less doctors equals less doctors appointments!!! Can you tell that I'm happy here???
Well I must go now. I had Coltan and Cody come home tonight and we had my homemade Lasagna for dinner and we just finished up and now we are going to sit down and watch CSI together.
Thanks for all of your prayers and support. I'm feeling really good for the first time in a long time about Carson and him getting better. Wouldn't that be great if all of these problems were caused by reflux?
Burrito Boyz, Toronto, ON (Adelaide W)
12 hours ago