Monday, October 03, 2005


Last night Max had three episodes of a significant drop in his heartrate. This is something entirely new for him. They did an EKG this morning and will probably repeat again this afternoon. Our doctor is meeting with the cardiologist today to review and discuss any changes in our plan.

We are having another care conference tomorrow to review everything and discuss the needed surgeries/procedures and possibly schedule one or two for later this month. I have a feeling his heart surgery might be sooner than we thought it was going to be...but we'll see.

As far as his nose, it is recovering well from surgery. The ENT docs check him daily to ensure it is not closing and so far so good.

It is always a "coming of age" when a baby officially pulls his feeding tube out by himself. This weekend marked that moment for Mr. Max! His neighbor (a four month old) pulled it out at the same time, so the nurses and I were joking that it was a baby conspiracy! I met with the surgeon on Friday to discuss our plan of action for his feeding now and in coming years. We have a few procedures to do this week to decide what surgery and feeding instrument will be best for Maxwell. There are three different options and two of the three will allow Max to not have to have continuous feeds, which would be nice and give us more freedom when he comes home.

1 comment:

Ruthie said...

I hope that you are able to hear the answers you want tomorrow. You both deserve a little relief when it comes to these meetings. But congrats to Max for doing the big boy thing! Maybe this will encourage the docs to do the procedure that will give you the freedom that you are hoping for.