What drugs???

This last week we have been going in every three hours to help with Matt's feeds. He was getting a little restless and agitated about 30 minutes before and after each feed, so the Doctor asked us if we could have someone there for his feeds. We managed to make most of his feeds. The only ones we didn't have someone there for were the midnight and the 3 am feeds. I think that is pretty good considering we had to cover every three hours. During those feeds Matt was still getting his morphine and phenobarbitol. Well today I am happy to announce that he is no longer getting morphine and he received his last dose of phenobarb at his noon feeding. YAY!!!! This is a huge step for him. This coming week he should be getting his permanent feeding tube "button" and also getting his central line (broviac) out. This is another HUGE step forward. 

I also believe they are going to do one last echocardiogram to make sure things still look as good as they did about a week and a half ago. They are also talking about doing a swallow study. They will have him swallow some barrium and then watch it with a flouoscope. This will let them know if he can tolerate feeds orally. If he can then I think they will try little amounts to see how he responds. They will not require him to be feeding orally to come home. He will be getting most of his feeds through his G-tube still. 

Now the next big step he needs to be able to come home is get off of the high flow nasal cannula. They have lowered his flow on the high flow form 4 liters to 2 liters. Hopefully this week they will try him on a standard cannula. If everything goes well with that, then maybe...just maybe we can hear the words we have been waiting 54 days for... 

We just ask that you continue to keep us in your thoughts and prayers.

Jaime